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Aug. 22, 2022

TOPIC: Members

2022 Living Rare Forum Q&A

Posted by Rohan Narayanan

On June 29, 2022, NORD hosted the Living Rare, Living Stronger Patient and Family Forum live in Cleveland, Ohio and simultaneously to the rare disease community virtually across the globe. During the engrossing sessions and inspiring stories, expert speakers were asked questions on key rare disease topics and resources. Due to such an engaged live audience, not all questions were able to be answered during the event.

NORD is thrilled to present critical follow-ups for the enthusiastic rare community participants of the Living Rare Forum.

What is the definition of a rare disease?
Any condition affecting fewer than 200,000 people in the United States is considered rare.

Where can I find the list of rare diseases?
The list of rare diseases from the NIH Genetic and Rare Diseases Information Center (GARD) is available here.

How can I learn more about gene therapy basics?
This page on the NORD website provides an overview of gene therapy, resources, and FAQs.

How can I connect with others who have the same disease if there are only a few known cases?
You can post on the NORD Facebook page under our “Community” section. We suggest that you use a hashtag (#) of your rare disease so other people searching for connections can find your post. You can also create a private Facebook group with the name of your rare disease.

How can I find a specialist who provides care for people with my rare disease?
Disease-specific patient organizations can help identify specialists. The NORD Rare Disease Centers of Excellence and GARD are other great resources to explore.

How can I get my insurance company to cover care from a healthcare provider in another state?
Contact your insurance company to let them know you need to see a specialist for your diagnosis. Ask your current medical provider to write a letter of medical necessity to your insurance company stating that you need care from a specific specialist in another state. Some insurance companies may be more likely to approve a telehealth visit (rather than an office visit) with an out of state provider.

When is the next Living Rare Forum?
Living Rare, Living Stronger 2023 will take place in Washington, DC on May 6, 2023! Save the date!

Are there other opportunities to engage with NORD this year?
Yes, at NORD’s 2022 Rare Diseases and Orphan Products Breakthrough Summit on October 17 and 18 in Washington, DC. Registration is open now! Join fellow rare disease leaders from patient advocacy groups, government, industry, and academia for exclusive access to fresh insights, compelling connections, and expert resources.