Key Search for Rare Disease by Name

The Genetic and Rare Diseases (GARD) Information Center (English and Spanish) 

Undiagnosed Disease Network 

Children’s Hospital of WI – Undiagnosed and Rare Disease Program 

ASGCT – Gene and Cell Therapy Education

University of Wisconsin Center for Rare Diseases

University of Wisconsin Undiagnosed Disease Program 

Telling Your Story Resources

WI Rare Disease Alliance Awareness Trifold

WI Rare Newborn Screening Social Graphics

WI Rare Copay Social Graphics

WI Rare Advocacy Social Graphics

WI Rare Disease Alliance Publicity Release

WI Rare Disease Awareness Day Socials

Zebra Coloring Pages (8.5×11) 

EveryLife Foundation for Rare Disease 

National Organization for Rare Diseases (NORD)  

Global Genes 

National Alliance for Caregivers (Caregiver Guidebook)

Patient Advocates Foundation   

Patient Services Inc 

The Assistance Fund 

HealthWell Foundation  

Children’s Wisconsin (Financial Assistance) 

NORD’s RareCare Patient Assistance Programs (Financial Assistance, Caregiver Respite, Education)

Orphanet Portal for Rare Diseases and Orphan Drugs 

Rare Disease Clinical Trials for Patients 

If you know of a resource that should be added to the list above, please share!