Cure CLCN6 non-profit organization
@cureclcn6.bsky.social
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.
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
www.youtube.com/@CureCLCN6
January 12, 2025 at 12:11 AM
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
www.youtube.com/@CureCLCN6