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Feb. 3, 2022

TOPIC: Patients & Members, Advocacy

NORD Gives Back: Advocacy and Action

Posted by Maia Craig

Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. 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 to discuss the importance of rare disease allies and advocates that fight for those affected by rare diseases and their families.    

This #NORDGivesBack content dives into different ways to become a rare advocate. If you want to become a rare advocate or ally this year, start with Rare Disease Day! This celebration falls on the rarest day of the year, Monday, February 28. Visit NORD’s Rare Disease Day website for ways to get involved! 


Fighting Back & Fighting Forward Through Advocacy 

This Living Rare Forum session explores how to get involved in rare advocacy and provide tips on how to become the best advocate you can be for the over 25 million Americans affected by rare diseases. 


The ABCs of Advocating for Your Child’s Education 

This important session from the Living Rare Forum summarized the rights and protections available to children in schools and helped parents develop the skills to effectively advocate for their school-aged children. 



Connect with others and pass on these resources to allies and advocates you know within the rare disease community. #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.