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In Loving Memory...

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This page is dedicated to beloved community members we lost to SDS and its complications. While we always try to celebrate any victories in our quest for therapies and cures, the reality of today is still that SDS is life threatening and is claiming the lives of too many. Every single person lost is one too many, and we won't stop until a  bright future is available to all people affected by SDS. Here, you can read the stories of patients lost and witness the love of their loved-ones left behind. This is a place to keep their memory alive. 

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Когда посты будут опубликованы, вы увидите их здесь.
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Shwachman-Diamond Syndrome Alliance Inc.

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Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

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The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

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