We are committed to sharing resources and information to help you on your journey with a rare disease.

Patient Support Resources

Find a list of organizations that can provide you with information about your condition and connect you with others living with rare diseases.

Learn More

Role of Patients in Rare Disease Research

Patients play a vital role throughout the research process, from basic research to providing input on study design.

Learn More

Caring for the Caregiver

As a caregiver of someone living with rare disease, it is important that you also attend to your own well-being and find support through other caregivers.

Learn More

Navigating Adulthood with Rare Disease

Find advice on how to gain independence as a young adult living with a rare disease.

Learn More