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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.

Join Us
About Us

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. 

About Us
Our Impact
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Join our mailing list.
Enter our Global Network.

Register Now

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.

Our Strategy
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For Patients and Families
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For Doctors and HCPs
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For Researchers and Industry

Join us live this fall at SDS POPS, our global virtual patient advocacy and partnering summit.

Register Now
All Events
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See our impact.
New collaborations,
further reach, faster progress.    

Featured News
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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. 

Join Us
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