Cure CLCN6 non-profit organization
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cureclcn6.bsky.social
Cure CLCN6 non-profit organization
@cureclcn6.bsky.social
90 followers 150 following 3 posts
We are a 501c3 dedicated to raising awareness of ultra rare neurodegenerative mutations on the CLCN6 gene, providing support and advocacy to impacted families, and funding the research and development of treatments for these devastating diseases.
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cureclcn6.bsky.social
We are parents of an 8-year-old with a CLCN6 mutation and have only found 2 families impacted by these mutations. Thus, we are looking for other families who are impacted by mutations on this gene! Please visit our youtube channel in which we discuss our journey.

www.youtube.com/@CureCLCN6
January 12, 2025 at 12:11 AM
cureclcn6.bsky.social
We recently had the honor of being guests on the "Once Upon a Gene Podcast" with Effie Parks where we discussed our rare disease journey and creating Cure CLCN6 Inc. in our efforts to develop a gene therapy for CLCN6 gene mutations.

effieparks.com/podcast/clcn...
ONCE UPON A GENE - EPISODE 252- Eight Years of Searching: A Determined Family’s Quest to Cure an Ultra-Rare CLCN6 Mutation with Kristin & Paul Purdy — Once Upon A Gene
Hear how this family’s eight-year search led them to discover their son’s ultra-rare CLCN6 gene mutation.
effieparks.com
January 11, 2025 at 11:53 PM
cureclcn6.bsky.social
In order to learn more about our organization and mission, please visit our website at CureCLCN6.org
January 11, 2025 at 11:49 PM