SDSF Announcements
SDS International Scientific Congress – Dates Announced
The dates for the 10th SDS International Scientific Congress have been announced. The Congress will be held April 19 - 22, 2022 in Cambridge, UK.
For more information, visit https://www.sdscongresscambridge.com.
Camp Sunshine 2020 Cancelled
It is with deep regret that we inform you that, out of an abundance of caution, we have cancelled our wee at Camp Sunshine in July.
We feel this is necessary in order to protect our SDS patients during this health crisis. We are working with Camp to secure a week for next summer.
Please stay healthy!
Coronavirus – A letter to families
SDSF - A letter to families about COVID-19Download
SDS Congress Canceled
We are sad to report that the SDS Congress in Cambridge, England is canceled due to Coronavirus concerns. It will hopefully be rescheduled in April 2021.
Exciting New Research Study
Medical literature and research studies have shown that the incidence of diabetes is higher in SDS patients than in the general population. It is important to determine if SDS patients are at risk for developing diabetes. Early diagnosis and treatment are essential to avoid the complications that diabetes can cause.
If you are a genetically confirmed SDS patient 3-year-old or above, PLEASE join this study. SDS patients who have already been diagnosed with diabetes are also asked to participate.
This study is free, it will require no travel. And perhaps best of all ...
2020 Camp Sunshine Dates Announced!
Save the date! Camp Sunshine dates have been announced for next summer!
July 12-17, 2020
Learn more about Camp Sunshine here.
The link below takes you to the application page. https://www.campsunshine.org/programs/applications
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 ...
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
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
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