Since 1983, NORD has been the primary source of support and information for patients and families affected by rare diseases. This Resource Center provides patients and caregivers with free webinars, fact sheets, infographics and other helpful materials to guide you on your journey with a rare disease.
NORD develops videos that cover a variety of topics that affect the rare disease community. These videos are educational, free and available to everyone. Below is a list of our most recent videos. For a full list of videos, please visit our Youtube channel playlist here.
- Gene Therapy 101: Your Questions Answered
- NORD’s Gene Therapy Video with Portuguese Subtitles
*translation provided by the Brazilian Association of Ataxian Patients*
- 5 Myths About Orphan Drugs and the Orphan Drug Act
- What Does an Insurance Plan Cover?
- How Much Does the Health Insurance Plan Cost?
RareEDU® Webinar Series
RareEDU webinars are live, interactive presentations that cover topics important to patients and caregivers. Like the videos, these webinars are free and intended for everyone to access. Below is a list of our most recent webinars. For a full list of recordings, please visit our Youtube channel playlist here.
- Self-advocacy and care coordination
- How specialty pharmacies support the rare community
- Generic Drugs and Biosimilars 101
- Rare Disease Day: Ways to Get Involved & Raise Awareness
- How to Make Your Health Insurance Work for You
- Open Enrollment for Health Insurance: What You Need to Know
- Genetic Testing 101 for People with Rare Diseases
Interested in being alerted as to when our next webinar will be? Sign up for alerts here.
Information on Rare Diseases
The Rare Disease Database® provides reports on rare diseases. Reports are written in patient-friendly language and each report links to disease-specific patient organizations and other resources that provide further support for patients and their families.
NORD's Rare Disease Database
Click here to visit our Rare Disease Database.
Use the links below to access additional resources available across the NORD website.
Advocacy is a great way to get involved in the rare disease community and make a difference. Learn how you can get involved today.
Patients and families coping with undiagnosed rare medical conditions may experience unique challenges in accessing appropriate medical care and social support. NORD has compiled a list of resources for the undiagnosed community.
If you are still in search of a disease specific organization, you can browse NORD’s Organizational Database to find an organization that may be able to support you.