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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.

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. 

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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.

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

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

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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. 

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