The National Organization for Rare Disorders (NORD) is dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

The Office of Rare Diseases Research (ORDR) at the National Institutes of Health (NIH) coordinates research and information on rare diseases at the NIH. The ORDR website aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR- sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

Genetic and Rare Diseases Information Center (GARD) is a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI), committed to helping people find useful information about genetic conditions and rare diseases.

The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives. NIH is made up of 27 Institutes and Centers, each with a specific research agenda that often focuses on particular diseases or body systems, and is the largest source of funding for medical research in the world. They have a comprehensive listing of publications and clinical trials, and offer resources by topic, disease, and age groups not limited to rare diseases.

EURORDIS, the voice of 30 million people affected by rare diseases throughout Europe, is a non-governmental patient-driven alliance of patient organizations representing 561 rare disease patient organizations in 51 countries. Rare disease patients are able to access new developments regarding their disease throughout the world.

Canadian Organization for Rare Disorders (CORD) Canada’s national network for organizations representing patients with rare disorders works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.

RARE DISEASE ADVOCACY

RareConnect is a multilingual site that connects rare disease patients globally. Living with a rare disease can be an isolating experience. RareConnect was created by EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources. Connect to join existing patient communities, or contact them to explore creation of a new disease-specific community for your rare disease group.

Genetic Alliance – Their programs and initiatives focus on a broad range of topics in genetics, health, and advocacy with a website that offers resources such as DiseaseInfoSearch, Newborn Screening, and Family Health History. Their initiatives improve health systems through partnerships with communities and individuals.

 

ORGANIZATIONS FOR UNDIAGNOSED OR UNNAMED SYNDROMES

Syndromes Without A Name USA (SWAN USA) is a non-profit tax exempt organization that offers support, information, and advice to families of children living with a syndrome without a name. SWAN also has organizations in other countries, too.

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program (UDP) pursues two goals. It strives to provide answers to patients with mysterious conditions that have long eluded diagnosis, and it is committed to advance medical knowledge about rare and common diseases.

In Need of Diagnosis (INOD) provides help and support to individuals with undiagnosed conditions.

CAREGIVERS – ADVOCACY AND SUPPORT

The Caregiver Action  Network (CAN) is a family caregiver organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN is a nonprofit organization providing education, peer support, and resources to family caregivers and serves a broad spectrum of family caregivers and care situations.

Family Caregiver Alliance This organization provides a public voice for caregivers, offering assistance through education, services, research, and advocacy.

Empowering Caregivers This site provides a safe, nurturing site for all caregivers with emotional and spiritual support and a vast amount of both online and offline resources for caregivers.

The Invisible Disabilities Association (IDA) encourages, educates, and connects people and organizations touched by illness, pain, and disability around the globe. IDA also offers resources for information about various illnesses, help with costs of medications, disability benefits, and more.

HealingWell.com features a thriving support community, blog, videos, a newsletter, articles, and resources to help patients actively manage the challenges of living with chronic illness.

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Family Voices utilizes affiliate organizations in each state, with a list at http://www.familyvoices.org/states. Resources include special topic areas such as workplace issues, benefits, and considerations for families with special needs. Others include information regarding health care and insurance, Title V, and family-centered care.

PATIENT ASSISTANCE PROGRAMS

Patient Access Network (PAN) Foundation provides co-payment assistance to underinsured patients with chronic diseases, including breast cancer. Qualified patients will be granted up to $7,500 per year to cover out-of-pocket expenses associated with their treatment.

Patient Advocate  Foundation (PAF) A national nonprofit organization that provides professional case management services to Americans with chronic, life-threatening, and debilitating illnesses. PAF case managers serve as active liaisons for you and your insurers, employers, or creditors to resolve insurance, job retention, and debt crisis matters as they relate to your diagnosis.

UnitedHealthcare Children’s Foundation The UnitedHealthcare Children’s Foundation is a 501(c)(3) non-profit charity dedicated to facilitating access to medical-related services that have the potential to significantly enhance either the clinical condition or the quality of life of the child and that are not fully covered by available commercial health benefit plans. This support is in the form of a medical grant to be used for medical services not covered or not completely covered by commercial health benefit plans.

See also http://uhccf.org/apply_applicant.html

The First Hand Foundation is a not-for-profit, 501(c)(3) organization that provides funding so individual children may have access to health care that would otherwise be impossible. Our mission is to directly impact the health status of a young life. Since our inception in 1995, First Hand has distributed more than $14 million to impact 134,000 lives in 76 countries.

Team Continuum is dedicated to helping cancer patients of all ages and with all types of cancer. They help cancer patients minimize the burdens of everyday life by providing immediate and vital assistance for non-medical essentials — such as paying their rent and utility bills — so they can focus on crucial medical care.

BrightHand At BrightHand we understand that hearing your child has a rare or undiagnosed disease is like entering an alternate universe. You still have work, family, financial, and other obligations while trying to find the best possible care for your child. When a child’s medical costs exceed a family’s ability to pay, BrightHand can help by assisting with co-payments for children with rare or undiagnosed diseases.

(NHGRI) at the National Institutes of Health (NIH) has information about financial assistance resources for people who need help paying for medical care.

HOME HEALTH CARE

Visiting Nurse Agency (VNA) VNA home health care services include assisting those persons who are recovering, disabled, chronically or terminally ill and are in need of medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living.

The National Association of Healthcare Advocacy Consultants (NAHAC) is a professional organization for people working in the field of health care advocacy. They seek to ensure consumer protection through development of professional standards and best practices in the field of health care advocacy.

AGE SPECIFIC RESOURCES

CHILDREN  (see also Education)

National Institutes of Health (NIH) Their category ‘Child & Teen Health’ offers a comprehensive listing of information and issues affecting children and teens. Explore the wide spectrum of physical, emotional, and social growth topics for children of all ages.

The American  Academy of Pediatrics (AAP) and its member pediatricians dedicate their efforts and resources to the health, safety, and well-being of infants, children, adolescents, and young adults.

The Department  of Pediatrics at National Jewish Health gives detailed information and suggested steps to help families cope with a child’s chronic illness.

The AACAP (American  Academy of Child and Adolescent Psychiatry) is a national professional medical association dedicated to treating and improving the quality of life for children, adolescents, and families affected by various disorders. This article about children with long-term illness is part of a Family Fact section.

Sensory Processing Disorder  Checklist. Many children with special health needs may have sensory issues (muscle coordination or overly/under-sensitive to certain sounds, smells, tastes, visual input) that affect functioning in both home and school environments. This simple checklist for parents is a good starting point to begin discussion with physicians, therapists, and school personnel. The link above is from the book The Out-of-Sync Child by Carol S. Kranowitz (1995).

Learning disability concerns at school or in the workplace? The Interactive LD Checklist can be utilized for preschool age through high school and with specialized adult surveys.

Family Voices believes that children with special health needs face common problems. With a focus on children’s health care, they offer information on family-centered care, health care financing, and other resources.

Social Security  Administration — Children and Social Security. A resource booklet for parents, caregivers, or representatives of children younger than age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (This SSDI benefit might be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)

The National Association of School Nurses (NASN) – Parents of children diagnosed with a rare disease often rely on the school nurse as a vital member of their child’s care team. Enlist the aid of the school nurse for assistance in such areas as creating an IHP (Individualized Heath Plan) or 504 plan (for children with special health care needs). School nurses are positioned to offer valuable insight into how chronic illness might impact the P.E.T. (Pupil Evaluation Team) process. The National Association of School Nurses offers SCHLRN-L, an online discussion group that promotes networking among school nurses to share information, insights, and resources.

Members of the National Association of School Nurses (NASN) recognize that there are students whose health care needs affect or have the potential to affect safe and optimal school attendance and academic performance. The professional school nurse can create an Individualized Healthcare Plan (IHP), in collaboration with the student, family, educators, and health care providers.

Part of the Social Security Act, Title V is the state program For Children and Youth with Special Health Care Needs (CYSHCN). Federal law mandates that Title V/CSHCN programs serve these children.

“Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” This definition can include physical conditions or children with disabilities. The Association of Maternal & Child Health Programs (AMCHP) works to improve the health of women, children, youth, and families, including those with special health care needs. AMCHP’s resource page with a detailed overview of Title V:

FMI see an overview of Title V at Family Voices: http://www.familyvoices.org/admin/work_titlev/files/TitleVforCYSHCN.pdfor visit HRSA, an agency of the U.S. Department of Health and Human Services www.hrsa.gov/orgchart.htm.

Camp Sunshine provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support.

AGE SPECIFIC RESOURCES  – TEENS

National Institutes of Health (NIH) Their category ‘Child & Teen Health’ offers a comprehensive listing of information and issues affecting children and teens. Explore the wide spectrum of physical, emotional, and social growth topics for children of all ages.

Chronic  Illness Resources  for Teens These resources are the result of a collaboration between the Koop Institute (C. Everett Koop in partnership with Dartmouth Medical School) and the S.T.A.R. Program for teens with chronic illness.

Focus Adolescent Services is a clearinghouse on information and resources regarding teen and family issues. They strive to empower individuals to help their teens and heal their families through education and support.

TeensHealth is part of the KidsHealth family of websites, and is a place for teens who need honest, accurate information and advice about health, emotions, and life. These sites, run by the nonprofit Nemours Center for Children’s Health Media, provide accurate, up-to- date health information that’s free of “doctor speak.” (The Nemours Foundation is a nonprofit organization, created by philanthropist Alfred I. DuPont, devoted to improving the health of children.) Written especially for the teen with a health condition, this resource outlines, in teen terms, issues involved in living with a chronic illness.

AGE SPECIFIC RESOURCES  – SENIORS

NIH SeniorHealth makes aging-related health information easily accessible for family members and friends seeking reliable, easy to understand online health information. This site was developed by the National Institute on Aging (NIA) and the National Library of Medicine (NLM), both part of the National Institutes of Health (NIH), offering a wide range of topics, videos, and tools for older adults.

The American  Geriatrics Society (AGS), a not-for-profit organization of health care providers, dedicated to improving the health and well-being of all older adults.

ART Therapy for Seniors:  The Assisted Living Federation of America (ALFA) is the largest national association exclusively dedicated to professionally operated senior living communities for seniors.

Click here to view the Art Programs: Enhancing the Lives of Older Adults Toolkit.

VETERANS

US Department  of Veterans Affairs Veterans of the United States armed forces may be eligible for a broad range of programs and services provided by the VA. As the nation’s largest integrated health care system, the VA’s health care offers a variety of services, information, and benefits, and they operate more than 1,400 sites of care.

The Disabled American  Veterans (DAV) is a non-profit 501(c)(4) charity dedicated to building better lives for America’s disabled veterans and their families. They provide free help with earned VA benefits, transportation and advocacy

VA Library  Network (VALNET) A compilation of consumer health websites, not limited to rare diseases.

The Department  of Health and Human Services (HHS) is the United States government’s principal agency for protecting the health of all Americans and providing essential human services. HHS and its operating divisions offer a variety of resources and programs specifically designed to support military families.

Angel Flight Veteran Arranges flights for veterans and active-duty military personnel and their families in need of compassionate medical air transportation.

EDUCATION – EARLY CHILDHOOD TO ADULT LEARNERS

The Office of Special Education Programs (OSEP) is dedicated to improving results for infants, toddlers, children, and youth with disabilities ages birth through 21 by providing leadership and financial support to assist states and local districts.

Serving the nation as a central source for information on disabilities, the National Dissemination Center for Children with Disabilities provides a wealth of information and resources for early intervention for babies and toddlers as well as children from ages 3 to 22 years old. Check the ‘State Resource Sheets’ that connect parents with the disability agencies and organizations for their particular state.

U.S. Department  of Education (Office of Special Education Programs) — IDEA: Individuals with Disabilities Education Act This site was created to provide a “one-stop shop” for resources related to IDEA and its implementing regulations, with access to cross- referenced content from other laws (e.g., the No Child Left Behind Act (NCLB) and the Family Education Rights and Privacy Act (FERPA), etc.). Among a variety of other information sources, you’ll find video clips on selected topics, links to OSEP’s Technical

Assistance and Dissemination (TA&D) Network and a Q&A Corner where you can submit questions. (URL above)

The National Center for Learning  Disabilities (NCLD) focuses on fostering success for all individuals with learning disabilities in school, at work, and in life. Below are some excellent resources regarding the impact of learning disabilities on all ages.

Learning disability concerns at school or in the workplace? The Interactive LD Checklist can be utilized for preschool age through high school and with specialized adult surveys.

Learning  Disabilities in Adulthood:

Learning  Disabilities in the Workplace:

Post-High School Options and Learning Disability Issues:

Information regarding the Americans with Disabilities Act, with links to associated topics of interest (such as Employment, Education, and Healthcare) as well as an overview of rights/laws.

Child Development — A Developmental Milestones Chart This developmental milestones chart is includes normal expectations of developmental milestones for children at birth through adolescence, in terms of physical, cognitive, and social development. Developed by The Institute for Human Services for the Ohio Child Welfare Training Program, its content was adapted from “The Field Guide to Child Welfare Volume III: Child Development and Child Welfare” by Judith S. Rycus, Ph.D., and Ronald C. Hughes, Ph.D. (Child Welfare League of America Press 1998). Download the pdf via the link above.

Sensory Processing Disorder Checklist Many children with special health needs may have sensory issues (muscle coordination or overly/under-sensitive to certain sounds, smells, tastes, visual input) that affect functioning in both home and school environments. This simple checklist for parents is a good starting point to begin discussion with physicians, therapists, and school personnel. From the book The Out-of-Sync Child by Carol S. Kranowitz (1995).

Grahamtastics Connection A non-profit program that provides laptops and Internet access to connect chronically ill children to their world, particularly vital for those missing school due to hospitalization or treatment schedules.

The National Association of School Nurses (NASN) Parents of children diagnosed with a rare disease often rely on the school nurse as a vital member of their child’s care team. Enlist the aid of the school nurse for assistance with such areas as creating an IHP (Individualized Heath Plan) or 504 plan (for children with special health care needs). School nurses are positioned to offer valuable insight into how chronic illness might impact the P.E.T. (Pupil Evaluation Team) process. The National Association of School Nurses offers SCHLRN-L, an online discussion group that promotes networking among school nurses to share information, insights, and resources.

Members of the National Association of School Nurses (NASN) recognize that there are students whose healthcare needs affect or have the potential to affect safe and optimal school attendance and academic performance. The professional school nurse can create an Individualized Healthcare Plan (IHP), in collaboration with the student, family, educators, and healthcare care providers.

OTHER U.S. GOVERNMENT RESOURCES

Information regarding the Americans with Disabilities Act, with links to associated topics of interest to aHUS adults (such as Employment, Education, and Healthcare) as well as an overview of rights/laws.

The Department of Health and Human Services (HHS) is the United States government’s principal agency for protecting the health of all Americans and providing essential human services. HHS’s Medicare program is the nation’s largest health insurer, and together Medicare and Medicaid provide health care insurance for one in four Americans. HHS works closely with state and local governments, and many HHS-funded services are provided at the local level by state or county agencies. The Department’s programs are administered by 11 operating divisions, including eight agencies in the U.S. Public Health Service and three human services agencies. This link brings you to the Family page offering a variety of resources for patients and their families.

U.S. Social Security  Administration — Children and Social Security. A resource booklet for parents, caregivers, or representatives of children younger than age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments. It is also for adults who became disabled in childhood and who might be entitled to Social Security Disability Insurance (SSDI) benefits. (This SSDI benefit might be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.)

The Supplemental Security  Income (SSI) program may pay benefits to disabled adults and children who have limited income and resources.

Publications

The Red Book — An overview of Our Disability Programs

A site sponsored by the National Institutes of Health, ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world. Its searchable database provides patients, family members, and the public with information about current ongoing clinical research studies.

Part of the Social Security Act, Title V is the state program For Children and Youth with Special Health Care Needs (CYSHCN). Federal law mandates that Title V/CSHCN programs serve these children.

“Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”

This definition can include physical conditions or children with disabilities. The Association of Maternal & Child Health Programs (AMCHP) works to improve the health of women, children, youth, and families, including those with special health care needs. AMCHP’s resource page with a detailed overview of Title V

FMI see an overview of Title V at Family Voices or visit HRSA, an agency of the U.S. Department of Health and Human Services.

OTHER MEDICAL INFORMATION (GENERAL)

Medline Plus, a service of the U.S National Library of Medicine and the National Institutes of Health, provides a rich source of information, resource links, videos, and more. Search for information by disease, organ, or topic.

Healthfinder.gov is a U.S. government website offering a variety of information, resources, and tools. Their wide range of health topics are selected from approximately 1,400 government and nonprofit organizations.

TOPIC-SPECIFIC ORGANIZATIONS

American  Cancer Society Offering information and resources for Cancer: Breast, Colon, Lung, Prostate, and Skin.

American  Heart Association — Building healthier lives, free of cardiovascular diseases and stroke. This AHA site includes risk assessment for heart attack and stroke, resources for advocates and scientists, and a “Heart and Stroke A-Z” guide.

The American  Liver Foundation strives to facilitate, advocate, and promote education, support, and research for the prevention, treatment, and cure of liver disease. Resources include a toolkit for patients with liver (biliary) disease and tips for caregivers.

American Lung Association Providing a variety of information and resources, their site features a Lung Disease Data Base and a toll free Lung Helpline.

American Thyroid Association (ATA) The ATA is a professional society of experts focused on research and treatment of thyroid pathophysiology. A specific portion of the site is dedicated for “Public & Patients.”

Arthritis, Musculoskeletal and Skin Diseases National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Sponsored by the National Institutes of Health, this page offers news, events and fact sheets, plus information on patient enrollment in clinical trials.

The American  Chronic  Pain Association raises awareness about chronic pain issues and facilitates peer support and education for individuals with chronic pain and their families, allowing these individuals to live more fully in spite of their pain.

The Heart, Lung and Blood Institute (HLBI), site sponsored by the NIH and the Department of Health and Human Services, offers information regarding clinical trials, news, and resources.

Mesothelioma Guide provides free information and resources on asbestos-related cancer. Learn more about this rare cancer and treatment options at www.mesotheliomaguide.com.

National Eye Institute (NEI) Sponsored by the NIH, this site provides health info, research, and clinical studies about the eye and vision issues.

National Institute on Deafness and Other Communication Disorders [NIDCD] A site sponsored by the National Institutes of Health, it provides health info, news about research, and an index of conditions and disorders.

The National Institute of Diabetes and Digestive  and Kidney Diseases (NIDDK) provides health and disease info for the public and the scientific community, as well as conducting and supporting basic and clinical research.

The National Institute of Neurological Disorders and Stroke (NINDS) is sponsored by the National Institutes of Health and features news and resources, plus links to neurological studies that are seeking patients.

The National Kidney Foundation (NKF) provides information on kidney disease for patients and doctors.

Special Olympics transforms lives through the joy of sport, every day, everywhere. The world’s largest sports organization for people with intellectual disabilities, it serves nearly 4 million athletes in more than 170 countries.

NUTRITION

The Academy of Nutrition and Dietetics  (formerly the American Dietetic Association) provides accurate information and various resources about nutrition, wellness, and related areas.

American  Nutrition Association The American Nutrition Association promotes optimal health through nutrition and wellness education. Educating both laypeople and professionals about the health benefits of nutrition and wellness, it focuses on science-based nutrition.

GENETICS

The Genetic Basics: Sponsored the Office of History within the National Institutes of Health, this resource gives an overview of genes, chromosomes, and their role in genetic diseases.

Genetics Home Reference (GHR) Consumer-friendly information on medical genetics for patients and their families.

The U.S. Human Genome Project was a 13-year effort coordinated by the U.S. Department of Energy and the National Institutes of Health The project goals included the identification of all the approximately 20,000-25,000 genes in human DNA, then to store, analyze, and discuss data and its utilization.  This link leads to multiple resources for diseases, treatment, research, family history, and other references.

This link brings you to ‘Genetics 101’, an educational overview explaining cells, DNA, and genes before moving into more detailed topics. http://www.ornl.gov/sci/techresources/Human_Genome/project/info.shtml

Gene Gateway is a collection of guides and tutorials with various Internet tools that the public can use to investigate in detail genetic disorders, chromosomes, genome maps, genes, sequence data, genetic variants, and molecular structures.

Online Mendelian Inheritance in Man (OMIM) Database of published scientific research relating to medically important human genes, traits, and genetic disorders. The site was developed by the National Center for Biotechnology Information (NCBI).  The language is technical, as it a very comprehensive source of information.

Family Health Portrait  Tool The Family Health Portrait Tool is an easy-to-use online tool developed by the National Human Genome Research Institute and the Surgeon General’s Office to help consumers gather their own family health history.

THERAPY INFORMATION AND ORGANIZATIONS

The American  Occupational Therapists Association (AOTA) Occupational therapy services typically include customized treatment programs to improve one’s ability to perform daily activities and can offer comprehensive home and job site evaluations with adaptation recommendations. OT personnel can offer treatment, adaptive equipment recommendations, and usage training after performance skills assessments with their client.

Programs include guidance to family members and caregivers, as well as information regarding work related topics, disability, and rehabilitation.

The American  Physical  Therapy Association (APTA) Search their resources at MoveForward PT, offering a wide variety of physical therapy topic-specific videos or podcasts, or browse by symptoms, conditions, or diagnoses. Don’t miss their innovative tool the Interactive Body.

The American  Speech-Language-Hearing Association (ASHA) is the professional, scientific, and credentialing association for more than 150,000 members and affiliates who are audiologists; speech-language pathologists; and speech, language, and hearing scientists. Great resource lists on hearing, speech, balance, and additional topics.

American  Music Therapy Association (AMTA) Music Therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship by a credentialed professional. Music therapy interventions can be designed to improve communication, alleviate pain, promote physical rehabilitation, and more.

American  Art Therapy Association (AATA) Art therapy is a mental health profession that uses the creative process of art making to improve and enhance the physical, mental, and emotional well-being of individuals of all ages. Research in the field confirms that the creative process involved in artistic self-expression helps people to become more physically, mentally, and emotionally healthy and functional, resolve conflicts and problems, develop interpersonal skills, manage behavior, reduce stress, handle life adjustments, and achieve insight.

Art Therapy in Health Care (please click on organization)

American Cancer Society, Beth Israel Center, Department of Integrative Medicine, Federal Emergency Management Agency, Johns Hopkins University, Mayo Clinic, National Institutes of Health, U.S. Department of Veterans Affairs, U.S. Substance Abuse & Mental Health Services Administration, Art Therapy in Health Care Bibliography

TRAVEL AND ACCOMMODATIONS  FOR PATIENTS

Children’s Miracle Network

Financial assistance for transportation associated with medical treatment may be available at a local Children’s Miracle Network Hospital. Call the national office telephone number to be referred to the local program director at a local Children’s Miracle Network Hospital, and they will help locate financial assistance for transportation, if funds are available.

NIH Office of Rare Diseases Research (ORDR) — This link related to patient travel and lodging is a compilation of resources regarding many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members. Additional information, as well as ambulance services, is also listed on the ORDR Web pages.

Ped-Onc Resource Center, a site dedicated to resources and information for parents of children with cancer, created by parents of children with cancer. Offers a vast array of travel options, including bus travel; most of these travel options serve all patient populations.

Angel Bus Long distance, no cost motor coach or bus transportation for patients.

Air Charity Network National charitable aviation network matching people in need with “free” flights and other travel resources that can provide healing and hope.

Aircare Alliance Provides referrals to charitable, long-distance, or air medical transport options.

American  Airlines: Miles For Kids In Need Provides transportation for seriously ill children up to the age of 18 in need of conventional medical treatment. Patient must be recommended by a social worker.

Mercy Medical Airlift Provides services to those in need of air medical transportation.

The Children’s Inn at NIH A private, nonprofit, family-centered residence for pediatric outpatients and their families at the National Institutes of Health.

Edmond J. Safra Family Lodge at NIH Offers a home-like place of respite for families and loved ones of adult patients who are receiving care at the NIH Clinical Center.

Air Charity Network (ACN) Provides services to people in need of access to free air transportation to specialized health care facilities in case of family, community, or national crisis.

Angel Flight at NIH Patient assistance, referral, and arrangements for all forms of ambulatory outpatient charitable or charitably assisted travel to and from distant specialized medical evaluation, diagnosis, and treatment; serves clinical trial patients.

OTHER TRANSPORTATION  PROVIDERS

Corporate  Angel Network (CAN) Arranges free travel on corporate jets for cancer patients, bone marrow donors, and bone marrow recipients.

Angel Flight Veteran Arranges flights for veterans and active-duty military personnel and their families in need of compassionate medical air transportation.

Air Ambulance Anywhere Provides fixed-wing air ambulance transport services for patients, family members, and providers of medical care; delivers bed-to-bed service, specialized medical care during transport, and other necessary incidentals for any of three levels of medical care — basic life support, advanced life support, and critical care — on domestic and international flights.

Air Transport Services/Ambulances A listing of commercial national and international ambulance services.

Air Compassion America A nonprofit patient advocacy/assistance organization that helps locate and coordinate bed- to-bed air ambulance services and/or airline medical escort services and assists patients’ families in saving an average of 40% off commercial air ambulance costs.

Air Ambulance Specialists, Inc. Provides fixed-wing air ambulance transport services for patients, family members, and providers of medical care; delivers bed-to-bed service, specialized medical care during transport, and other necessary incidentals for any of three levels of medical care — basic life support, advanced life support, and critical care — on domestic and international flights.

American  Jets, Inc: Air Ambulance Airborne intensive care ambulance unit that responds to emergencies around the globe, 24 hours a day, 7 days a week.

National Patient Air Transport Helpline (NPATH) Provides information about all forms of charitable, long-distance medical air transportation. Will refer cancer patients to Mercy Medical Airlift for free tickets.

OTHER LODGING PROVIDERS

Joe’s House An accommodation expert to help patients with their travel needs with various types of lodging throughout the United States.

National Association of Hospital  Hospitality Houses Provides lodging and other supportive services to patients and their families when they are confronted with medical emergencies.

The Ronald McDonald House program provides a “home-away-from-home” for families so they can stay close by their hospitalized child at little or no cost, thus improving the lives of children and their families by providing programs that strengthen families during their most difficult or challenging times.

This Rare Disease Resource List is presented by The Foundation for Children  with Atypical HUS as a public service for patients, families, and all who deal with the diagnosis of a rare disease.

For inquires regarding our Foundation or the Rare Disease Resource List, please contact linda@atypicalhus.org or Co-Founder of The Foundation for Children with Atypical HUS, Bill Biermann at:

The Foundation for Children with Atypical HUS
attn.: Bill Biermann
One Campbell Plaza, Suite B
St. Louis, MO 63012

RARE DISEASE RESOURCE LIST

A Compilation of State Resources

A PUBLIC SERVICE PRESENTED BY

This national Rare Disease  Resource List was compiled by Linda Burke, founder of www.atypicalhus.org. A dynamic resource list, it serves only as a starting point for your information search. Entries will be added, modified, and updated on a regular basis. State Rare Disease Resource Lists can be found after the national entries – volunteer to create your state’s resource list if it is not already present. Resource information and links to be considered for inclusion should be submitted to linda@atypicalhus.org.

RARE DISEASE RESOURCE LIST FOR THE STATE OF MAINE

INFORMATION AND RESOURCE CENTERS

2-1-1 Maine is a comprehensive statewide directory of over 8,000 health and human services available in Maine. The toll free 2-1-1 hotline connects callers to trained call specialists who can help 24 hours a day, 7 days a week. Finding the answers to health and human services questions and locating resources is as quick and easy as dialing 2-1-1.

The Maine Parent Federation  is a statewide organization that provides information, advocacy, education, and training to benefit families of children and adults with disabilities and special health care needs.

A service of the Maine Parent Federation, Starting  POINTS for Parents is an online community for families of children with disabilities Providing Opportunities for Information Networking, Training and Support as they learn, share, and connect about the educational and developmental needs of their children.

The MaineHealth Learning  Resource Center has a health educator at each location and can provide personalized help to patients to learn about a disease or treatment, as well as connect people with outreach, awareness, and resources.

The University of Maine Center for Community Inclusion and Disability Studies (CCIDS) brings together the resources of the university and Maine communities to enhance the quality of life for individuals with developmental disabilities and their families. They are committed to enhancing and promoting the interdependence, productivity, integration, and inclusion of Maine citizens with disabilities and their families.

FAMILY FOCUSED RESOURCES

Gaining Empowerment Allows  Results (GEAR) helps connect parents to prevent isolation and share knowledge gained by experiences with their children’s disabilities. Through

parent-to-parent sharing of experiences and knowledge, G.E.A.R. Parent Network empowers parents of children with behavioral health needs to build on their family’s strengths and to advocate for their family’s needs.

The Maine Alliance  of Family Organizations (MAFO) is a statewide alliance that formed to better serve families of children with disabilities and special health care needs, and to strengthen family voice.

The MAFO video: Working Together, Growing Stronger offers personal stories of the importance of family organization support.

A Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services.

Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

Southern  Maine Parent Awareness  (SMPA) is dedicated to providing information, referral support and education to families who have children and youth with special needs throughout Maine. They offer individualized family conferences, consultation via telephone and email, and assistance in preparing for IFSP/IEP meetings.

CHILD FOCUSED RESOURCES

The Maine Children’s Alliance  (MCA) is committed to improving the lives of Maine’s children, youth, and families. Acting as nonpartisan, data-focused advocates for public policies that improve the lives of Maine’s children, youth, and family, the MCA seeks to link research to practice and public policy as they serve as a resource on children and family policy issues.

Department  of Health and Human Services, Office of Children  and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

Children’s Behavioral Health (CBH) provides information and assistance with referrals for children and youth with developmental disabilities/delays, intellectual disability (mental retardation), Autism Spectrum Disorders, and mental health disorders. Behavioral health treatment and services are available for children from birth up to their 21st birthday.

Families and Children  Together (FACT) Their family focused programs encourage and foster the development and healing of children with emotional and behavioral challenges.

Camp Sunshine  provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year- round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support.

PROGRAMS AND SERVICES

Camp Sunshine  provides respite, support, joy, and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year- round program is free of charge to all families and includes 24-hour onsite medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

The Morrison Center is a private, not-for-profit agency that specializes in the support and development of children and adults with and without disabilities. Offering a broad range of day programs and services, they support individuals and their families and encourage maximum growth and independence. Programs include the Friends First Preschool & Child Care Program, a K-12 School Program, and the adult AHEAD I and II programs.

The Maine Division for the Blind and Visually  Impaired (DBVI) offers comprehensive services for visually impaired and blind individuals of all ages. Offering vocational rehabilitation services to help individuals retain or return to employment, DBVI can provide individual counseling, guidance, and vocational assessment as well as orientation and mobility instruction to develop independent travel skills.

MaineHealth Learning  Resource Center offers a helpful website for anyone affected by cancer.

National Alliance  on Mental Illness of Maine (NAMI Maine) is dedicated to improving the quality of life of everyone affected by mental illness. Services are provided both directly and through a statewide structure of local affiliates and support groups. NAMI Maine offers compassion and provides social/emotional support, as they educate, inform, provide resources, and advocate for quality services.

The Pine Tree Society provides Maine children and adults with disabilities the opportunities and the means to create better lives for themselves and their families.  People with disabilities may feel left out or isolated, but with the help of Pine Tree Society, they lead richer, more socially connected lives. Sharing a spirit of innovation, we help discover ways to break down barriers that many find insurmountable. Our service areas are: Assistive Technology, Communication, Community Supports, and Accessible Recreation.

Special Olympics transforms lives through the joy of sport, every day, everywhere. The world’s largest sports organization for people with intellectual disabilities, it serves nearly 4 million athletes in more than 170 countries.

LOCATION-SPECIFIC  PATIENT SERVICES

CarePartners  1-877-626-1684 www.mmc.org/mh_body.cfm?id=3441 coordinates the provision of donated health care services for low-income, uninsured residents in four Maine counties (Cumberland, Lincoln, Waldo, and Kennebec). The program, a partnership among MaineHealth, physicians, hospitals, and other health care providers, helps community members who don’t qualify for public or private healthcare coverage programs get comprehensive, medically necessary healthcare.

The Children’s Center, a nonprofit organization, advocates for children with differing abilities and their families by offering programs that encourage individual growth and development of children, providing support for their families and promoting community inclusion. Respite Care is a statewide program, funded by the Department of Health and Human Services (DHHS) and run by contract agencies in Portland, Augusta, and Bangor. Respite Care supports families raising children with special needs. The Children’s Center is located in Augusta and offers a fully accessible playground that includes a unique 30-foot- long water feature.

The Beth Wright Cancer Center in Ellsworth offers support groups, resource materials, informational lectures and films, wellness activities, Reiki, Yoga, and transportation assistance.

The Patrick Dempsey Center for Cancer Hope & Healing provides free support, education, and integrative medicine services to anyone impacted by cancer. Patients served are in Androscoggin, and Cumberland.

ADVOCACY

Client Assistant Program — C.A.R.E.S. is a privately held company that provides advocacy, case management, and assistive technology for Maine’s citizens with disabilities. C.A.R.E.S. offers advocacy, case management, program evaluation, and policy development and administers three federally funded programs including Independent Living Services (ILS) for veterans with disabilities through the Veterans Administration (VA) at Togus.

Disability Rights Center (DRC) provides individual advocacy through several different programs it operates. Each program has eligibility requirements and case selection criteria. Descriptions of the programs, the eligibility requirements, and the case selection criteria are available through DRC. DRC is available to provide training to individuals with disabilities, providers of services, the general public, and family/friend support networks.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance.

PATIENT ASSISTANCE PROGRAMS

MedAccess  works with individuals and health care providers to identify ways patients can save money on prescription medications. The free program, administered by MaineHealth, helps patients and health care providers evaluate options.

Many hospitals are committed to treat all patients who need care regardless of their health insurance or financial status. For medically necessary treatment, most offer services to help you arrange for payment of your bill, from insurance billing to payment plans and even financial assistance, which may qualify you for free care or reduced payment. Eastern Maine Medical Center (EMMC) has a representative program similar to other hospitals and clinics throughout Maine; call your local hospital to inquire.

GOVERNMENTAL  PROGRAMS OR AGENCIES

The Department  of Health and Human Services (DHHS) for the State of Maine provides integrated health and human services to the people of Maine to assist individuals in meeting their needs within available resources, while respecting the rights and preferences of the individual and family. They strive to deliver services that are individualized, family-centered, easily accessible, preventive, independence-oriented, interdisciplinary, collaborative, evidence-based, and consistent with best and promising practices. For a wide array of programs and resources, see Department of Health and Human Services, Office of Children  and Family Services (OCFS) provides information and referrals for children to their 21st birthday with developmental disabilities/delays, mental retardation, Pervasive Developmental Disorder (PDD)/autism, and mental health disorders. The Office of Child and Family Services (OCFS) serves Maine’s children and their families through the Divisions of Child Welfare, Children’s Behavioral Health, Early Childhood, and Public Service Management.

The Children  with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

The Office of MaineCare Services (OMS) coordinates a variety of programs and benefits, ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Maine CITE Program, affiliated with the Maine Department of Education, is the statewide organization designed to help make assistive and universally designed technology more available to Maine children and adults who need them.

A Family Information Specialist or FIS (DHHS Dept. of OCFS) Providing information and referral services about resources needed by parents of a child with special needs, the FIS can offer resource lists that include such varied information as specialized summer camps, support groups, medical professionals, case management, and home & community based services.

Each FIS is a parent of a child with special needs who works with families and the Office of Children and Family Services (OCFS) to meet the needs of the children, also working closely with many different professionals and organizations.

The Division of Vocational Rehabilitation (VR) is a Department of Labor program that helps people who have disabilities to find and keep a job. VR helps people who have physical, mental, or emotional disabilities and also assists students with disabilities in coordinating information and resources as they transition from high school to adult life.

The Office of MaineCare Services (OMS) oversees MaineCare (also known as Medicaid), Maine Rx Plus, and Drugs for the Elderly and Disabled.

MaineHealth Learning  Resource Center offers a helpful website for anyone affected by cancer.

Medicare provides health insurance for people age 65 or older and under age 65 with certain disabilities.

MAINE HEALTH CARE

Ensuring that they operate under consistent policy in keeping with the Department’s goals and Federal mandates, and are administered effectively and efficiently. Programs include MaineCare (also known as Medicaid), Maine Rx Plus, Drugs for the Elderly and Disabled, and free or low-cost health insurance for families with children and pregnant women. http://www.maine.gov/dhhs/oms/

The Children  with Special Health Needs Program’s mission is to improve the health and well-being of this population by developing and sustaining community-based systems of care. Part of the Population Health, the Children with Special Health Care Needs program is affiliated with the Maine Department of Health and Human Services and the Maine Center for Disease Control & Prevention.

Katie Beckett is one MaineCare option for children under 18 with serious health conditions. If a child meets the rules for this option, that child may be eligible for MaineCare’s full benefits. Contact your local DHHS office if you have questions about the Katie Beckett benefit and ask to speak with the Katie Beckett Eligibility Specialist.

Consumers for Affordable Health Care (CAHC) has worked to protect the rights of health care consumers in Maine. This nonprofit, nonpartisan organization is committed to helping all Maine people obtain quality, affordable health care with activities that include research, advocacy, education, and consumer assistance.

EDUCATION

The Maine Department  of Education is committed to shaping an education system that meets the needs of all learners and providing additional support to those who require it. Ensuring that students with special needs succeed in their learning, the Office of Special Services oversees early intervention services to eligible children age birth to under age three and their families (provided under IDEA, Part C) and Free Appropriate Public Education to eligible children age three to 20.

The Office of Special Services, part of the Maine Department of Education/Special Education Services, is responsible for the state’s oversight and support for the delivery of all special education services provided in Maine under the federal Individuals with Disabilities Education Act (IDEA). This includes early intervention services to eligible children age birth to under age three and their families, provided under IDEA, Part C, and Free Appropriate Public Education to eligible children age three to 20.

A guide to Special Education in Maine (online book). Chapter 11 has information on a 504 plan for children with special medical needs.

The Child Development Services system provides both Early Intervention (birth through two years) and Free Appropriate Public Education (for ages three through five years) under the supervision of the Maine Department of Education.

Grahamtastics Connection A nonprofit program that provides laptops and Internet access to connect chronically ill children to their world, particularly vital for those missing school due to hospitalization or treatment schedules.

TRAVEL AND ACCOMODATIONS  FOR PATIENTS

Angel Flight Northeast  1-800-549-9980 arranges free flights for those requiring access to medical care.

Arbor House Located near Central Maine Medical Center in Lewiston, Arbor House provides lodging for patients and their families. For more information about the Arbor House, call 207-795-2398.

Hope Lodge, Boston,  MA offers a free place to stay for patients who travel to Boston for treatments (through American Cancer Society 1-800-227-2345).

This Rare Disease Resource List is presented by The Foundation for Children  with Atypical HUS as a public service for patients, families, and all who deal with the diagnosis of a rare disease.

For inquires regarding our Foundation or the Rare Disease Resource List, please contact linda@atypicalhus.org or Co-Founder of The Foundation for Children with Atypical HUS, Bill Biermann at:

The Foundation for Children with Atypical HUS
attn.: Bill Biermann
One Campbell Plaza, Suite B
St. Louis, MO 63012

RARE DISEASE RESOURCE LIST

FOR THE STATE OF RHODE ISLAND

A Message from Patty Weltin, founder  of the Rhode Island Rare Disease Foundation (RIRDF)

The Rhode Island Rare Disease Foundation benefits Rhode Islanders living with a rare disease, regardless of disease. Disease specific foundations provide an invaluable resource for families; however, for a considerable number of diseases no foundation exists. Often, members of disease specific foundations are spread all over the world. The RIRDF will encompass all rare diseases. The diseases may be different, but the challenges faced by the rare disease community remain the same: inaccurate diagnosis, no diagnosis, lack of awareness, insurance and other reimbursement issues, and a terrible sense of isolation. By connecting locally and encompassing all rare diseases, the RIRDF can build a strong rare disease community in Rhode Island and throughout the country.

Rhode Island Rare Disease Foundation http://www.rirdf.org

P.O. Box 16294
Rumford, RI 02916
Tel: 401-434-0052
FAX: 401-434-0039
riraredisease@verizon.net

KIDSNET KIDSNET helps assure that all children in Rhode Island are as healthy as possible by getting the right health screenings and preventive care at the right time.

Early Intervention Early Intervention services are designed to serve children younger than three years of age who are experiencing developmental delays in one or more of the following areas: cognitive, physical, communicative, social/emotional, or adaptive development skills.

Rhode Island Parent Information Network Our mission is to assist individuals, parents, families, and children to achieve their goals for health, educational, and socioeconomic well being by providing information, education, training, support, and advocacy for person/family centered care and systems change. A Family Voices state affiliate.

About Families About Families teams children with special health care needs and their families with experienced, licensed clinical staff and dedicated family service coordinators with the goal of creating and implementing comprehensive plans of care that address the needs of the child and the family as a whole.

The ARC of Blackstone Valley The Arc of Blackstone Valley is committed to supporting people with intellectual and developmental disabilities secure the opportunity to choose and realize their goals of where and how they live, learn, work, and play.

Special Olympics Rhode Island The Special Olympics Rhode Island program is one of the world’s most dynamic, providing over 1,400 year-round sports training and athletic competitions for more than 2,800 athletes and hosting over 40 local, regional, and statewide tournaments and competitions each year in 25 official and demonstration sports.

If your organization assists Rhode Island rare disease patients, please highlight your efforts by forwarding your information to linda@atypicalhus.org and to the Rhode Island Rare Disease Foundation riraredisease@verizon.net.