View a list of helpful patient organizations, government agencies, and companies working with your rare disease. You can also find several national organizations working with rare diseases or orphan products.
It can be very helpful and comforting to talk to someone who understands what it’s like to deal with your rare disease. Joining a support group could be a great way to find other individuals who understand what you're experiencing.
Read helpful information about your condition.
Patients with rare diseases can take an active role in finding a cure for these conditions by participating in drug studies. Find out about local studies and what you need to know before you participate.