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BE COUNTED

As a community of parents, those living with DESSH, and their siblings, friends, and caregivers, we are uniquely bound together by a common thread. We are strengthened by our mutual experiences and the shared pursuit of solutions to the challenges inherent in WAC gene-related disorders. 

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To join the community and keep up to date with research and news, click below to let us know of your DESSH diagnosis.

ATTEND THE DESSH CLINIC

The DESSH Foundation held its first DESSH clinic in conjunction with Dr. Marwan Shinawi in 2022. The goal of the clinic is to advance research efforts toward a cure for DESSH and provide an in-person meeting for those affected. 

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KEEP ACTIVE WITH EVENTS

We host awareness and fundraising events for DESSH multiple times per year like the Dash for DESSH, Songs for DESSH, and Rare Disease Day. Stay updated with upcoming events to support our cause.

PATIENT REGISTRY
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PARTICIPATE IN RESEARCH

DESSH patients, families, and caregivers are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive DESSH Data Collection Program, we can accelerate research and the development of new drugs and therapies. Only you hold the key to unlock future discoveries.

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