The Atypical HUS Foundation

Resource List for Rare Disease Patients/Caregivers

 

Hundreds of Resource Links

to Inform and Support

Patients, Caregivers, Families, and Professionals

 

 

Click Here for a pdf of the National

Rare Disease Resource List PDF


State-Specific Resources - a State by State List

Click HERE for the State Resource List

 States are Listed Alphabetically


RARE DISEASE RESOURCE LIST

             National and State Resources for Families and Professionals                

A Public Service sponsored by the Atypical HUS Community at www.atypicalhus.org

National Rare Disease Resource List Categories:

 

RARE DISEASE ORGANIZATIONS

 

RARE DISEASE ADVOCACY

 

Organizations for UNIDIAGNOSED or UNNAMED Syndromes

 

CAREGIVERS – ADVOCACY AND SUPPORT

 

Patient Assistance Programs

 

HOME HEALTH CARE

 

INSURANCE ASSISTANCE

 

Age Specific Resources

 

VETERANS

 

Education – Early Childhood to Adult Learners

 

SOCIAL SECURITY / DISABILITY

 

U.S. Government Resources

 

Medical Information (General)

 

TRANSPLANTS

 

Topic-Specific Organizations

 

NUTRITION

 

GENETICS

 

Therapy Information and Organizations

 

Travel and Accommodations for Patients

 

Other Transportation/LODGING Providers

 

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