Research


We Need Your Input – Complete Survey

We want your input—regardless of where you live and if your child is clinically or genetically diagnosed. We want to hear from YOU. And we’ll let you know the results of the survey. Survey https://forms.gle/5yNuWvKEt6hqrnQp9

Read More


Online Survey – Rare Families/COVID-19

SDS Families-- Please complete this online survey! https://www.rarediseasesnetwork.org/covidstudy The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

Read More


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 ...

Read More


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...

Read More


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


Connor’s Heroes nonprofit hopes to encourage pediatric cancer research in Richmond

“I’m hopeful that as more and more people in the local community learn that there is pediatric cancer research happening right here in Richmond, that they don’t have to send a check to St. Jude’s or St. Baldrick’s, they can actually donate to Connor’s Heroes and it goes right to research that’s happening here,” said Lisa Goodwin, the group’s executive director and Connor’s mom. Dr. Seth Corey and his team are able to manipulate the zebrafish genes so the fish have features similar to children with SDS.

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


8th International Congress–Pictures and Presentation Abstracts

8th International Congress on Shwachman-Diamond Syndrome, Verona, Italy:                                   Selected Hematology Abstracts of Interest to Patients and Families - Johnson M. Liu, MD Johnson M. Liu Patients with SDS demonstrate varying degrees of bone marrow failure, including isolated neutropenia, mild to moderate thrombocytopenia, anemia, and/or pancytopenia.  Neutropenia is the most common hematologic ...

Read More


Recent Research Articles Added to Site

If you haven't checked out the newest medical articles regarding Shwachman Diamond Syndrome published in 2015, we encourage you to do so. We added 21 new articles to our list of articles to our "Research Articles" page. To date, we now have a total of 383 research articles written about Shwachman Diamond Syndrome. That number is remarkable and we are very grateful for our wonderful doctors and researchers!

Read More