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 ...
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
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
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)firstname.lastname@example.org Packages too large for a typical PO Box may be sent to:106 Hillside DriveFlorence, KY 41042
In 2019, we are looking to expand our board! If you are interested in joining us, email us at email@example.com. Tell us what you would be interested in doing and how you can help! Deadline - January 31st.
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.
"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, ...
The dates for the 9th International Congress on Shwachman-Diamond Syndrome have been announced.... APRIL 8-11, 2018 Texas Medical Center in Houston, Texas
In honor of Rare Disease Day on February 28, 2017, we’re challenging you to show your support for SDS patients and DONATE ANY AMOUNT to help patients afflicted with Shwachman-Diamond Syndrome. Please visit our RARE DISEASE DAY FUNDRAISING WEBSITE to help us reach our goal of $3,000 before February 28, 2017. Help us spread the word about our Rare Disease Day Fundraising Challenge by sharing via social media and/or email.
Shwachmand Diamond Syndrome Foundation was at the ASH (American Society of Hematology) Annual Meeting in San Diego, CA December 3-6, 2016. Here are a few pictures of some visitors at our booth as well as some new studies and information.