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Jan. 24, 2022

TOPIC: Patients & Members

NORD Gives Back: Rare Disease & Family Life

Posted by Maia Craig

Being a family member or friend of someone with a rare disease can be a challenging experience. 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 inspire hope and share experiences for those affected by rare diseases and their families.    

This #NORDGivesBack content dives into the experiences of living/having a sibling with a rare disease. Explore this interesting and important perspective to spark conversation and provide a safe space for the siblings of patients with rare diseases.  

 The Rare Sibling Experience 

Discover the unique challenges and opportunities of growing up the sibling of a rare disease patient. This engaging and affecting resource showcased panelists sharing about the joys and obstacles they’ve encountered on their journeys and how love for their sibling has led them to advocacy.  

 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.