National Organization for Rare Disorders (NORD)

IAMRARE Registry ProgramProgram

People with rare diseases can join a registry and share their experiences. This helps researchers better understand and treat rare diseases.

Living Rare StudyProgram

Adults living with a rare disease and caregivers can share their lived experiences in this study. People who are undiagnosed but suspected of having a rare disorder can take part too.

NORD HelplineService

NORD's Support Helpline is a phone line that helps families find rare disease information and resources. Staff can point you to specialists, clinical trials, genetic counseling, and ways to pay for care.

NORD Resource Center and Rare Disease DatabaseService

NORD's website has free webinars, videos, fact sheets, and reports on rare diseases written in plain language. The database links to groups for specific diseases.

Patient Assistance ProgramProgram

NORD's RareCare programs give money help to people with certain rare diseases. Help can go toward medicine, insurance premiums and co-pays, diagnostic tests, and travel for clinical trials or visits to disease specialists.

Rare Disease Centers of Excellence NetworkProgram

NORD works with medical centers that focus on rare disease diagnosis, care, and research. NORD cannot schedule visits or refer you; your own doctor makes the referral.

Rare Disorder Caregiver Respite ProgramProgram

This program gives money so a full-time caregiver of a person with a rare disease can pay for a short-term respite caregiver. It can cover a nurse, nursing assistant, home health aide, or a non-professional caregiver.

State Resource CenterService

NORD's State Resource Center lists organizations in each state that offer free or low-cost programs for people affected by rare disease. You can search by state or by topic, such as caregiver support or insurance.