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We’re part of the @ChanZuckerbergInitiative’s #RareAsOne Network

A group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases.

Rare As One

Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries.

7,000 rare diseases, one community fighting for cures. 

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EYE ON HEALTH: Raising Awareness for Lafora Disease

Eye On Health

President of Chelsea’s Hope, Frank Harris was featured on @wcbtv channel 3 in Tennessee to raise awareness and discuss his story of caring and loosing his daughter Kelsey who had Lafora disease.

View Article of TV segment here

Direct YouTube Link

Rare Mamas Rising Feature

One of our rare mamas, Niki Markou has been featured on the Rare Mamas website that is empowering rare disease moms. Rare Mamas contains blogs, podcasts and resources by rare disease mom founder, Nikki McIntosh who is a writer, speaker and advocate for mamas who care for children with rare disease. “It was an honor to be featured on her page.” said Niki Markou who is one of our Chelsea’s Hope board members

To read the article go to