Belgian Mother Founds Association for Rare Syndrome

Why this is here: The HADDS syndrome, first identified in 2016, impacts the nervous system, muscle tone, speech, and overall development of those affected.

Lévana Gérard in Étalle, Belgium founded the non-profit Ylon’Hadds to support families affected by HADDS syndrome. Gérard created the association after her daughter Ylona received a diagnosis following a lengthy medical journey. Ylon’Hadds aims to raise awareness of HADDS, a rare neurodevelopmental condition linked to a mutation in the EBF3 gene.

The association provides financial support to individuals with HADDS and children awaiting diagnosis. It also offers emotional support, facilitates connections between families, and assists with administrative processes. Symptoms of HADDS include low muscle tone, balance issues, developmental delays, and speech difficulties.

Currently, Ylon’Hadds operates with limited resources and relies on donations. The organization hopes to expand its reach and impact as awareness of HADDS grows. They can be reached by phone at 0497 12 35 05 or via email at ylonhadds@gmail.com.