Would you like to help raise awareness and funding for Shwachman-Diamond Syndrome? You have come to the right place! You will find many tools, here, and we will keep adding more. Feel free to request anything you may need.
Raising awareness helps save lives.
Awareness in the general public increases the chances that patient families will consider pursuing a diagnosis sooner, and therefore benefit from better medical care
Awareness in the medical community helps providers consider an SDS diagnosis sooner, and allow them to provide better medical care
Awareness in the research community can attract more research projects and collaborations, accelerating treatment development
Raising funds helps support our critical programs needed to enable and accelerate research.
Flyers, Brochures, and more!
Email us at connect@SDSAlliance.org if you need hard copies.
Short SDS Awareness Videos to Share
Rare Disease Day
Global SDS Awareness Week!
The SDS patient advocacy groups from around the world came together earlier this year to pick a time to raise awareness about SDS, together! We created a dedicated page for all the organizations to post their events and help each other promote them. Please share, share, share!
Save the date! Last week of April!
Kim from SDS UK came up with the idea to pick a time to coincide with April 25th - which was Dr. Harry Shwachman's birthday. Drs. Shwachman and Diamond were instrumental in defining Shwachman-Diamond Syndrome with their landmark publication in the journal Pediatrics in 1964, entitled "The Syndrome of Pancreatic Insufficiency and Bone Marrow Dysfunction".
Each participating patient advocacy group will design their own, local awareness campaigns, share ideas, and partner on bigger joint events. Stay tuned -- we will add more details closer to April! We can't wait.