SDS – Rare Disease Infographic

The SDSF is proud to present an infographic that helps explain facts about Rare Diseases and Shwachman Diamond Syndrome! What a wonderful resource to help raise awareness about SDS on Rare Disease Day (February 28). This document will be a great conversation-starter that you can distribute to family, friends, classmates, coworkers, etc. Post on social media and help us spread awareness! DOWNLOAD AS A PDF

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Order Your SDS Rare Disease Day Shirt

Show your support in honor of Rare Disease Day and be Shwachman-Diamond strong! CLICK HERE TO ORDER: Deadline is Feb. 9, 2019 FRONT of shirt BACK of shirt

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SDSF Change of Address

We've changed our mailing address! Please note the change. Shwachman Diamond Syndrome FoundationP.O. Box 6723Florence, KY 41022Toll Free: 1-888-825-SDSF (7373)info@shwachman-diamond.org Packages too large for a typical PO Box may be sent to:106 Hillside DriveFlorence, KY 41042

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SDSF Board Expansion

In 2019, we are looking to expand our board! If you are interested in joining us, email us at info@shwachman-diamond.org. Tell us what you would be interested in doing and how you can help! Deadline - January 31st.

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Save the Date: 10th International SDS Congress

The dates for the 10th International Congress on Shwachman-Diamond Syndrome have been announced! Save the date for April 6-9, 2020 in Cambridge, UK. 10th International Congress on Shwachman Diamond Syndrome SDSF is an important sponsor for this meeting. Our funds help bring experts, researchers, and clinicians together to present and discuss research findings, treatment, and care of patients with SDS. Please continue to support SDSF so we can support the Congress and research for patients of SDS. To read more about the SDS Scientific Congress, please visit ht...

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Board Announcement

We regret to announce the resignation of Christine Jamess as president of SDSF. We wish to thank her for hard work and dedication. We wish her the best in her future endeavors.

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#GivingTuesday – November 27

#GivingTuesday, observed on the Tuesday following Thanksgiving (11.27.2018), celebrates giving back. Why not give back to the Shwachman Diamond Syndrome Foundation to help fund research for a cure? In support of #GivingTuesday on November 27, 2018, Facebook is partnering with PayPal to match up to $7 million in donations made on Facebook to eligible US-based 501(c)(3) nonprofits. The match applies to fundraisers for nonprofit organizations, including birthday fundraisers and Donate buttons. Fundraisers for personal causes aren’t eligible to receive the ...

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February Fundraising – Dare to Cure Rare

February 28 is Rare Disease Day. Help us raise awareness and funds for Rare Disease Day and Shwachman Diamond Syndrome this month! Join us in our challenge -- Dare to Cure Rare! We challenge you to create a fundraising campaign this month--whether it is selling t-shirts, hosting an event, creating a fundraiser on facebook, organizing a "dress down day" at your work or child's school, selling SDSF magnets or creating your own fundraiser! Join us to raise awareness and fund a cure!

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SDSF at ASH Conference

"It was a true pleasure representing SDSF at the ASH Conference. Christine, Pam, Carol Kolar and I spent many hours talking to physicians and researchers from numerous countries. We discovered SDS patients in many countries, including India, Venezuela, Russia and China and others. We also were able to attend some oral presentation relevant to SDS as well as view several poster presentations. We’re happy to report that there were more presentations and information shared about SDS at this year’s conference than at any previous ASH conference."     --Joan Mowery, ...

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#GivingTuesday – November 28

Giving Tuesday, observed on the Tuesday following Thanksgiving (11.28.2017), takes the focus off of the commercialism of Black Friday and Cyber Monday and instead celebrates giving back. Why not give back to the Shwachman Diamond Syndrome Foundation to help fund research for a cure? On #GivingTuesday Facebook and the Bill & Melinda Gates Foundation are matching up to $2 million of funds raised on Facebook for U.S. nonprofits and Facebook is also waiving all fees for donations made to nonprofits on Facebook. Make your facebook donation on 11.28.2017.  

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