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Global SDS Awareness Week

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Welcome to the annual GLOBAL SDS AWARENESS WEEK information page! This page provides you with access to all the great initiatives by the SDS community - SDS patient advocacy groups and SDS superhero families from around the world.

The community chose a week at the end of April to mark Dr. Harry Shwachman's birthday. Drs. Shwachman and Diamond, as well as Dr. Bodian, were instrumental in defining Shwachman-Diamond Syndrome with their landmark publication in the journal Pediatrics in 1964, entitled "The Syndrome of Pancreatic Insufficiency and Bone Marrow Dysfunction". 

It is our hope that more and more organizations and families will participate over time so that this campaign can grow and reach more families and medical providers.

Raising awareness can save lives. Any diagnosis made sooner lessens the burden and suffering of the diagnostic odyssey, and life-saving interventions can begin sooner. The SDS community can grow to support more targeted research, accelerating the pace toward therapies and cures.


If you have questions about any particular event or campaign, please reach out to the hosting organization or family directly. Donations to any of the SDS organizations are always welcome and appreciated. Visit their respective websites for details.

If you are an SDS patient or family looking for peer-to-peer support or local support organizations, please check out the list on the SDS Alliance website, here. General information about SDS for patients and families can be found here

Global Events

T-shirt Design Contest

Details here

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SDS Story Series

Huge thanks to all the SDS families from around the world for sharing their stories!


The stories are available on the SDS Alliance social media channels:

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To raise awareness about SDS as part of the Global SDS Awareness Week in 2021, the SDS Alliance is launching a series of SDS Stories on all it's website, Facebook, and Twitter. We are looking for stories from around the world, the good, the bad, and the ugly :). We want to raise awareness that SDS manifests itself and impacts families in a wide variety of ways, so that more patients can be diagnosed sooner and benefit from community support and better treatments. We also want to show the world that the SDS community is strong and worthy of investment into new therapies and cures. Join us by sharing YOUR story. 

Visit our Patient Stories page, contact the SDS Alliance on Facebook or email us at

The SDS Alliance Mission & Impact Video

Huge thanks to all the SDS families from around the world for helping with this video. Together, we will turn hope into action, and action into results. Let's create a brighter future for our kids! Please share!

National Events


Local Events


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