Living with a chronic, rare disease can be costly, complicated and time consuming to manage. This page is intended to serve as a community reference to help connect patients and caregivers affected by Gorlin syndrome find critical resources.
If you know of a resource that you would like to suggest for this page, please contact the GSA at info@gorlinsyndrome.org.
General:
The NORD RareCare® Patient Assistance Programs help individuals living with rare diseases:
Obtain medication
Receive financial help with insurance premiums and co-pays
Get diagnostic testing assistance
Receive travel assistance for clinical trials or consultation with disease specialists
PAF provides personalized case management and assists patients with the costs of care and practical expenses. All services are provided individually to those patients that are facing a chronic, life-threatening or debilitating diagnosis, and the caregivers and providers that are working on behalf of a patient. Programs include:
Patient Access Network Foundation accelerates access to treatment for those who need it most and empowers patients on their healthcare journeys. They provide critical financial assistance for treatment costs and advocate for policy solutions that expand access to care.
Global Genes RARE Concierge provides free resources, education, and connections to the rare disease community. Support includes guidance on reaching a diagnosis, finding specialists or care resources, understanding research and clinical trials, accessing social and emotional support, and identifying financial assistance for treatment, travel, or care.
Lists programs that help people who cannot afford medications and healthcare costs. NeedyMeds has information about government programs, low-cost or free medical and dental clinics, and prescription assistance. NeedyMeds also has disease-specific financial aid programs.
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need. All in one place.
Pursuing an education while living with a rare disease—or supporting a loved one with one—comes with unique challenges, but cost shouldn’t be one of them. The EveryLife Foundation proudly supports students through Community Scholarships, making education more accessible for those in the rare disease community.
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