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A child with Shwachman-Diamond Syndrome SDS taking care of a stuffy in the hospital

Shwachman-Diamond Syndrome is a
life-threatening condition.
We save lives by developing new therapies.

Join our network of patients, families, doctors, and researchers, working together to drive research and accelerate therapy development, so that people with Shwachman-Diamond Syndrome can live their lives to their full potential.

Our Story

We bring patients, caregivers, doctors, and researchers together to drive research and accelerate therapy development.

As a patient advocacy nonprofit, we build and share research tools and infrastructure, amplify the patient voice to guide therapy development, create collaboration frameworks and opportunities, and strategically invest funding into projects with a potential to become transformative therapies. 

An adult with Shwachman-Diamond Syndrome and a physician specialized in SDS care and research standing together at conference

Join our mailing list.
Be part of our Global Network.

Be the first to learn about updates on SDS research, care guidelines, therapy development, advocacy, and community news. 

Developing a therapy for SDS is complex, expensive, and never fast enough.
Our programs are designed
to get it done. Now.

Amazing Opportunity to Be Heard:
SDS PFDD Meeting

Externally-Led Patient-Focused Drug Development Program (EL-PFDD) meeting for Shwachman-Diamond Syndrome.  June 4th, 2025. Cinicnnatti, OH and Virtual via Zoom.

SDS PFDD Meeting Logo icon with a marnifying glass to focus on Shwachman-Diamond Syndrome Patients and Caregivers
A Shwachman-Diamond Syndrome patient smiling and wearing a baseball hat

See our impact.
New collaborations,
further reach, faster progress.    

2345

Let’s give SDS patients and their families more birthdays to celebrate. Join us.

Join our global network of patients, families, doctors, and researchers, working together to drive research and accelerate therapy development, so that people with Shwachman-Diamond Syndrome can live their lives to their full potential. 

A Shwachman-Diamond Syndrome SDS family celebrating the birthday of one of their daughters with SDS with a cake and candle
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