Financial Resources

The Jack McGovern Coats’ Disease Foundation’s mission is to fund research into finding improved treatments and a cure for Coats’ Disease. While we are not in a position to support individual patients’ medical expenses directly, we do provide the following resources in which patients may find financial support for their treatment.

Within the United States: 

National Institutes of Health – The cost of care for rare medical conditions can place a significant financial burden on families. This resource may help you find the financial support you need.

National Organization for Rare Disorders (NORD)

Partners for Pediatric Vision 

Prevent Blindness Financial Resources

 

International Financial Assistance:

GARD Information Specialists – If you live outside the United States and need help with financial assistance for a rare medical condition, GARD information specialists have a list of Patient Advocacy Groups located in other countries.

EURORDIS is a patient-driven alliance representing over 700 rare disease patient organizations in Europe. EURORDIS may have disease-specific resources that can help with the cost of living with a rare disease.

Orphanet is a European reference portal for information about rare diseases and orphan drugs. Orphanet allows you to find patient advocacy organizations that support specific rare diseases in different countries. Click the “Patient Organisations” tab at the top of the specific disease page.

 

Pursue Your Dreams through the #RAREis Scholarship Fund
Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones.

That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Learn more at https://learnmore.scholarsapply.org/rareis/

Additional Resources

Raregivers

Raregivers™ is a global network that delivers emotional support to caregivers, patients and professionals in rare, chronic and complex disease communities. We deliver daily compassion and relief to individuals who feel isolated and overwhelmed.

Raregivers™ is singularly focused on providing necessary mental health and wellness services to raregivers – from sustainable psychosocial training and transformative retreats to a connective peer-to-peer multilingual network. Raregivers currently supports over 20,000 rare families across 33 countries.