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Jan. 14, 2022

TOPIC: Patients & Members

NORD Gives Back: The Future of Rare

Posted by Maia Craig

As we enter this new year, we are looking toward the future of the rare disease community. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum. From engaging plenaries to breakout sessions to speakers from across the globe, this dynamic content from the conference is here to inspire hope for those affected by rare diseases and their families.    

Let’s celebrate the new year and the future of the rare community with #NORGivesBack content.  


Rare Breakthroughs: Now and on the Horizon 

The closing plenary of Living Rare, Living Stronger 2021 is a hopeful and forward-thinking exploration of new innovations that are helping to improve diagnosis, treatment, and care of rare disease patients. To celebrate and give thanks, delve into “Rare Breakthroughs” for a look at the future of care, tools in development, and possible advances in the future. 

Getting Involved in Clinical Research: Finding and Preparing for Clinical Trials 

One of the biggest struggles faced in the rare community is the lack of clinical trials geared towards rare diseases. This breakout session of Living Rare, Living Stronger 2021 outlined how to find clinical trials and explore related topics such as eligibility requirements, managing expectations and possible outcomes. 


Connect with others and pass on these resources and your thanks this season. #NORDGivesBack 

Access the full playlist on YouTube today. Subscribe to NORD’s channel to be alerted to new videos as soon as they are released.