Topic Specific Organizations

American Academy of Audiology – Resources for Kids & Teens

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.

Bohring-Opitz Syndrome Foundation helps families and patients affected by BOS through family assistance programs. Learn more at http://bos-foundation.org/.

Brain Trauma and Equal Opportunity: What you need to know – TBI occurs when the brain is in some way damaged by external forces to the head. Traumatic brain injury is not the same as brain damage acquired by way of a cerebral accident or stroke, nor is TBI the same as a congenital brain defect such as Downs Syndrome. TBI can be caused by penetrating and non-penetrating blows to the head. TBI injuries range from a mild concussion to severe and intractable brain damage. Learn more at http://www.swoperodante.com/traumatic-brain-injury-trauma-equal-opportunity/

Career Assistance for the Deaf and Hearing Impaired

Cerebral Palsy Group– This foundation provides free educational information and support to those who have been affected by cerebral palsy and other developmental disabilities.

Cerebral Palsy Guidance was created to provide answers and assistance to parents of a child with cerebral palsy. Our goal is to reach as many members of the cerebral palsy community as possible, building up a network of support, as well as providing necessary assistance.

The Chromosome 9p-Minus Network is a nonprofit, parent-based support group with a mission to improve the lives of families affected by 9p Deletion Syndrome by connecting families, offering knowledge, and improving access to information about this rare genetic disorder. Learn more at http://9pminus.org.

The Cord Blood Center is committed to giving you relevant, up-to-date information on benefits, pricing and current research for cord blood stem cells. Learn more at http://www.cordbloodbanking.com.

Ehlers Danlos National Foundation– The winter 2015 issue of the magazine. Ehlers Danlos Foundation is a national foundation based on Ehlers Danlos Syndrome. http://www.ednf.org

Hearing Loss Association of America is the nation’s leading organization representing people with hearing loss.

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.

Help With Paying Bills is a site that helps low income families with finding financial assistance programs. Our directory lists assistance programs that help with utility, energy, rent and medical bills. Learn more about this at helpwithpayingbills.org

Learning Disabilities Association of America (LDA) – LDA’s mission is to create opportunities for success for all individuals affected by learning disabilities and to reduce the incidence of learning disabilities in future generations. Learn more at http://ldaamerica.org.

Mesothelioma Center is an advocacy group that promotes awareness on mesothelioma and asbestos exposure. Learn more about Mesothelioma at www.asbestos.com.

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

Mesothelioma Group provides support and encouragement with those that have Mesothelioma and their families. Learn more at www.mesotheliomagroup.com.

Mesothelioma.net– Our patient advocates are here to support you, answer your questions, provide you with resources and inform you about your financial options. We have helped hundreds of patients, and we’re here to help you and your loved ones today. Learn more at https://mesothelioma.net/.

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.

Online Directory of Audiology and Speech-Language Pathology– This website helps those who have problems finding doctors that specify in speech, language etc.

Personal Finance Guide for People with Disabilities

Prader-Willi Syndrome Guide

Rights for Those With Hearing Loss

Self- Help Groups for Speech, Language and Swallowing Disorders – The following organizations provide information about speech, language, and/or swallowing disorders and some sponsor self-help groups.

Speaking Freely: Empowering Speech Therapy Apps – This is a resource guide featuring a collection of speech therapy apps and other technologies organized by the disorders for which they’re most useful. Many of these apps can be used by children to complement the therapy they’re receiving from their SLP while others can be used by SLPs, parents, and teachers to help guide children with speech disorders through their therapies. Learn more at http://www.attsavings.com/resources/speech-therapy-guide.

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.

Tips for Selecting Toys for Your Speech Delayed Child

Types of Hearing Loss

United States Society for Augmentative and Alternative Communication (USSAAC) – Our members join forces to improve the services, resources and products used by children and adults who turn to AAC methods in order to communicate. We strive to enhance the communication effectiveness and, ultimately, the independence of persons desiring access to an alternative communication system. Learn more at http://www.ussaac.org.

We Connect Now is dedicated to uniting people interested in rights and issues affecting people with disabilities, with particular emphasis on college students and access to higher education and employment issues.

What’s Hearing Loss? (Guide for explaining to kids)