SDSF Announcements


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, ...

Read More


The dates for the 9th International Congress on SDS have been announced!

The dates for the 9th International Congress on Shwachman-Diamond Syndrome have been announced.... APRIL 8-11, 2018 Texas Medical Center in Houston, Texas

Read More


2017 Rare Disease Day (Feb. 28) Fundraising Challenge

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.

Read More


2016 ASH Conference

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.        

Read More


SDSF – Approved CFC Charity

SDSF is now listed on the CFC (Combined Federal Campaign) Charity List for the 2016 campaign.  Federal employees and members of the military will be receiving a list of all the eligible charities very soon and be encouraged to donate to the charities of their choice.  SDSF is listed in the 2016 national/international independent agencies under the number 10799.  Please share this information with any of your friends or relatives who are federal employees and ask them to consider making a donation to SDSF through the CFC.

Read More


Camp Sunshine 2016

During July 10-15, an outstanding 47 Shwachman Diamond Syndrome families from across the US and Canada had the opportunity to learn, laugh, and make connections at Camp Sunshine in Casco, Maine. For the week, parents and SDS adult patients listened to medical presentations from physicians who specialize in Hematology, Health/ Psychology, Genetics, Gastroenterology, Endocrinology, and more! During the presentations, the children enjoyed arts and crafts and fun time with their amazing camp counselors. Families also enjoyed down time with sand volleyball, the indoor pool, ...

Read More


Help Spread the Word about Our Rare Disease Day Fundraising Challenge

In honor of Rare Disease Day on February 29, 2016, 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 $5000 before February 29, 2016. So far, we’ve raised  $0. We need to raise $5000 more to reach our $5000 goal. Thank you very much for your generous donation! Help us spread the word about our Rare Disease Day Fundraising Challenge by sharing via social media and/or email.

Read More


Camp Sunshine 2016 Dates Announced

MARK YOUR CALENDAR - SDS week at Camp Sunshine this summer is July 10th to 15th. Watch the Camp Sunshine website as the SDS week applications will be posted very soon.

Read More


New Banners Created

As a way to showcase who and what we are, we decided to update our current banners. These banners will be displayed at medical conferences, family conferences, fundraisers, or any other event in which signage will add to our cause. A board member designed the three banners below and we had them printed by "A Big Difference Signs" from St. Louis. The first banner talks about the specifics of Shwachman Diamond Syndrome as a genetic syndrome. The second banner displays our logo and a wonderful collage of several patients living with SDS. Lastly, the third banner showcases ...

Read More


SDSF New Board Member

Shwachman-Diamond Syndrome Foundation has the pleasure of introducing our newest Board Member, Nicole Shen. We are looking forward to working with her and welcome her to our SDS family.

Read More