Episode three of RareAF: Advocacy & Facts, In episode three of Rare AF, we celebrate the holidays while shining a light on resources that support the rare disease community. This episode explores the realities of the season and where to find help when it’s needed most.

Watch and listen to new episodes of RareAF every month and follow us on Social Media for all the best moments from the show: https://linktr.ee/RareAFpodcast. You can also listen to new episodes Spotify, Youtube or Apple Podcasts.

Resource Checklist: 

https://heritagebiologics.com/wp-content/uploads/2025/12/resourcechecklist.pdf

 Rare Disease Specific 

• National Organization for Rare Disorders (NORD) — The oldest and most comprehensive U.S. rare-disease nonprofit, providing patient assistance programs (medication, diagnostics, caregivers support), a rare-disease database (over 1,200 conditions), and connections to specialized treatment “Centers of Excellence.” Rare Disease Community - National Organization for Rare Disorders 

• PAN Foundation (Patient Access Network Foundation) — Helps patients (including those with rare diseases) by providing financial assistance for out-of-pocket healthcare costs, advocacy, and education. PAN Foundation - Patient financial assistance, advocacy, and education 

• Ben's Friends — Online peer-support communities for people living with rare diseases or chronic illnesses (and their caregivers). Offers community, connection, support, and shared experience. Patient Communities for People with Rare Diseases 

• Take Part Foundation — Focuses especially on children with rare or undiagnosed diseases; supports research and raises awareness. Take Part Foundation 

• Serenely Guided Foundation — Provides resources for patients, caregivers, and families affected by rare diseases, including support around wellness, nutrition, patient navigation, and awareness. Rare Diseases Support | Serenely Guided Foundation In conjunction with Mom’s Meals 

• GARD (Genetic and Rare Diseases Information Center) 

• Every Life Foundation 

• The Hope Project for Kids 

• Hope Kids 

• Rare Diseases Clinical Research Network 

• Take Part Foundation 

• RareKC – Look for local organizations for less competition 

• MGA/Hope for Hemophilia/CureDuchenne- Look for disease specific organizations 

• Accessia Health 

• Rare Diseases International- For listeners outside of US 

• Caregiver Action Network- For rare disease caregiver support/resources 

General Assistance 

Organization / Resource | What they offer / Why they help 

United Way | Works across the U.S. to strengthen communities — aiding with health, education, financial stability, childcare, crisis support, and more. United Way | United Way Worldwide 

Feeding America  | The nation’s largest hunger-relief network: runs 200+ food banks, helps with food insecurity via pantries, shelters, and community-based agencies. Donate to Feeding America | Feeding America 

Volunteers of America (VOA) | Offers affordable housing and other supportive services to low-income individuals, families, seniors, veterans, people with disabilities, and those experiencing homelessness. Home Page - Volunteers of America 

Family Promise | Helps families (especially with children) who are homeless or at risk of homelessness through emergency shelter, transitional housing, mentoring, case management, childcare, and financial-literacyprograms. Home - Family Promise 

The Salvation Army (in the U.S.) | Provides emergency shelter, transitional living, support for homelessness, food, utility and rent/financial assistance, and other basic-needs support. Location Search | The Salvation Army USA