Blue & Gold
When Gia was diagnosed with Hajdu-Cheney Syndrome, her parents didn’t wait for the world to catch up. They built the foundation, secured the conference, and…
Poems
A small population of plasma cells distorts vascular biology, immune signaling, endocrine systems, and peripheral nerves through cytokine excess. It is not size that determines…
(ECD) Erdheim-Chester Disease
In ECD, somatic mutations (acquired during life, NOT inherited) create a “stuck-ON” switch.
(SPS) Stiff Person Syndrome
The KYSA-8 trial just reported outcomes that doctors called “truly remarkable” — results they’ve never seen with existing therapies. This could become the first FDA-approved…
Community Call Out
Community Callouts Hajdu-Cheney Syndrome Fewer than 100 documented cases worldwide You found us — and you’re not alone anymore A welcome from Thomas Cheesman, founder…
(HCS) And Me, My experience with Hajdu Cheney Syndrome
This rare condition (Hajdu Cheney Syndrome) makes my bones break down (Osteoporosis) faster than they can rebuild and causes degradation of connective tissues which is…