SDS Family Day Details

The Shwachman-Diamond Syndrome Registry (SDS Registry) is hosting the 2019 SDS Registry Conference, in Boston, MA. The Registry would like to share exciting new advances in their understanding of SDS made possible by the participation of everyone enrolled in the Registry. The SDS Registry welcomes you to this meeting to learn more about ongoing research, clinical trials, and treatments for SDS.  ORGANIZERS:Akiko Shimamura, MD, PhD and Kasiani Myers, MD DATE:Sunday, September 15, 2019. VENUE: Harvard Medical School Joseph B Martin Center77 Avenue Louis ...

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May Fundraising – Spring into Fundraising

It's SPRING-time and everyone wants to enjoy the outdoors! What a perfect time to have FUN hosting an outdoor fundraiser for Shwachman-Diamond Syndrome Foundation. Let's "Spring" into Fundraising! Now that the weather is nice, start a new fundraiser! Host a plant sale, car wash, or garage sale. Take on a part-time gig of walking dogs or mowing lawns. Any proceeds can be donated to SDSF! Join us to raise awareness and help FUND a cure!

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SDS Family Day – 9/15/19

The Shwachman-Diamond Syndrome Registry invites SDS families to a complementary day of education, connection, and fun! See the flyer for more information! SDS Family Day PDF FlyerDownload

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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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