Patient Stories

Stories connect. This page is dedicated to our global community of patients and families who are all impacted by SDS in various ways. No matter whether your SDS is "mild or severe", your story matters! We want to paint a picture of what SDS looks like and how varied the experiences are -- 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.

Contact the SDS Alliance on Facebook or email us at We are publishing patient stories on the SDS Alliance blog, Facebook page, Twitter, end more. You can make it as personal as you like with names, photos, and more, or keep it more private to fit your preference. We will help with editing and layout. We will work with you. 

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Shwachman-Diamond Syndrome Alliance

To advance treatments and finding a cure for Shwachman-Diamond Syndrome.

Contact us:


Phone: +1-617-329-1838

Mail: PO Box 2441
          Woburn, MA 01888

Shwachman-Diamond Syndrome Alliance is a US based not-for-profit 501(3)c corporation, serving the global SDS community.

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