By participating in the registry, patients and families not only become a part of a community, they also contribute to the quest for a cure. Join the SDS Registry team to help find a cure for SDS.

Biological samples and medical record information are essential for research on SDS. For this rare condition, every patient participating in the SDSR helps advance knowledge  about SDS and moves us closer to finding a cure.

Your gift saves lives. Help find a cure for SDS. Breakthroughs happen here — so children and adults everywhere with SDS can be treated. Every dollar counts in the fight to cure SDS.