Resource List Compiled by:  Carly Schmidt

Kelly Anne Dolan Memorial Fund – Pennsylvania
The Kelly Anne Dolan Memorial Fund provides advocacy, education, information and financial assistance for the uninsured needs of families caring for terminally, critically and chronically ill, seriously disabled or severely injured children.

MedGift is a web page where patients and their advocates are invited to create their own Support Page to share with friends and family.  The page is designed to connect patients with people who can provide financial, physical, or emotional support.  Examples of uses for your MedGift page include setting fundraising goals, collecting donations, finding volunteers who will help patients with daily tasks and chores (transportation, pet sitting, lawn care, meals, etc…), keeping friends and family updated on patient progress, and allowing visitors to leave words of encouragement.

The Pennsylvania Patient Safety Authority is a government agency dedicated to reducing and eliminating medical errors and promoting patient safety in hospital.  The Authority goes through all reports of malpractice and recommends safer methods to medical workers.  The site also includes a mailing list that patients can sign up for to stay updated on new medical advisories.

The Partnership for Prescription Assistance for Pennsylvania is an organization that helps qualified patient that do not have prescription drug coverage to get their medications for free or at a lower price.  Patients need only to fill out an online application and the PPA will connect them with any programs they are eligible for.

Search through AdvoConnection’s patient advocate database to find local advocates to assist with a variety of different functions including accompaniment to medical appointments, assistance with understanding conditions and treatment options, helping to make medical decisions, and finding legal assistance with medical errors and insurance issues.

The Pennsylvania Department of Health is the government agency that oversees anything related to health and health care in Pennsylvania.  Its mission is to promote healthy lifestyles, prevent injuries or diseases, and assure quality health care for Pennsylvania residents.  This is a comprehensive site for just about any issues or questions related to health care in Pennsylvania.

PennDOT Online Organ Donor Registration – Many states allow residents to designate their wish to become an organ donor, and often drivers can register to have an organ donor decal displayed on their driver’s license.   Share the gift of life, become an organ donor and encourage others to sign up to become organ donors.

The Pennsylvania Chronic Renal Disease Program was designed to provide care for adults with end-stage renal disease.  Its duties include assisting with the cost of dialysis, transplants, medications, and more.  This site includes an application for enrollment in the program.

The Pennsylvania Insurance Department is the government agency that is tasked with administering any state laws regarding insurance.  Information can be found on the site regarding health insurance, life insurance, and more.

The Pennsylvania chapter of the Donate Life organization is responsible for raising funds and awareness for organ donation.  It also provides information about what exactly organ donation entails and gives aid to patients in need of a tissue or organ transplant.

 The Gift of Life Donor Program is a local non-profit organization that helps coordinate transplants for patients and gives support to donors.  Their website includes a wealth of information about the process of organ donation intended for patients, donors, donors’ families, and health care professionals.

The Center for Organ Recovery & Education (CORE) is one of 58 federal not-for-profit organ procurement organizations (OPOs).  The Pittsburgh-based organization connects patients with donors and provides education about the organ donation process.

The Pennsylvania Rare Disease Legislative Scorecard lists Pennsylvania’s representatives in Congress and has a chart recording their votes on a number of bills related to the health and welfare of patients with rare diseases. The RDLA site also has links to contact information for representatives as well as ways to keep up with relevant bills that have been introduced.

The Pennsylvania Department of Human Services has a database of the contact information for each Pennsylvania State Hospital and lists which counties are served by each hospital.

The Pennsylvania Health Care Cost Containment Council (PHC4) is an organization which addresses escalating health costs, ensuring quality health care, and increasing access to health care for Pennsylvania citizens regardless of economic stature.

The Pittsburgh Regional Health Initiative is an organization that works to develop and manage programs, research, training, and grant making for patients and health care workers.  Particularly useful resources include hospital-based Primary Care Resource Centers and the Perfecting Patient Care program.

Caregiver Champions  Caregiver Champions (in conjunction with the Jewish Healthcare Foundation) is an organization which helps support patients’ family members and informal caregivers by teaching them methods of care not just for their patient, but for themselves.  In particular, they include resources for identifying and reducing caregiver stress.

The Pennsylvania eHealth Partnership Authority was created to improve health care delivery and outcomes in the state by enabling the secure exchange of electronic health information.  This system allows physicians and health care providers to more easily access patient information and share it with the patient’s other doctors.

Main Line Health is a network of several hospital and health centers in eastern Pennsylvania.  Their website includes information about a number of classes, events, and health screenings at their participating hospitals.  Events listed can include prominent speakers in the health field as well as a number of fundraisers.

 

*Courtesy of www.atypcialhus.org, Linda Burke, Founder