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Raise Awareness

Would you like to help raise awareness and funding for Shwachman-Diamond Syndrome? You have come to the right place! You will find many tools, here, and we will keep adding more. Feel free to request anything you may need.

Raising awareness helps save lives. 

  • Awareness in the general public increases the chances that patient families will consider pursuing a diagnosis sooner, and therefore benefit from better medical care 

  • Awareness in the medical community helps providers consider an SDS diagnosis sooner, and allow them to provide better medical care

  • Awareness in the research community can attract more research projects and collaborations, accelerating treatment development 

Raising funds helps support our critical programs needed to enable and accelerate research.

Flyers, Brochures, and more!

Email us at connect@SDSAlliance.org if you need hard copies.

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Personalized fundraising tools, such as flyers, cards, and fundraising web pages! We are here to help! Email us at connect@SDSAlliance.org.

Short SDS Awareness Videos to Share

Rare Disease Day

Global SDS Awareness Day/Week/Month!

The SDS patient advocacy groups from around the world came together in 2020 to pick a time to raise awareness about SDS, together! We created a dedicated page for all the organizations to post their events and help each other promote them. Please share, share, share!

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Shwachman-Diamond Syndrome Alliance Inc.

Social:

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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