What is SDS:

Shwachman-Diamond Syndrome

What is SDS:

Shwachman-Diamond Syndrome

Description & Symptoms

Shwachman-Diamond syndrome (SDS) is an inherited rare disease that affects many parts of the body, particularly the bone marrow, pancreas, and skeletal system. As a bone marrow failure disorder, it puts patients at high risk of life-threatening complications such as serious infections (sepsis), aplastic anemia, myelodysplastic syndrome (MDS), and acute myeloid leukemia (AML). There is no cure or targeted treatments for SDS thus far, and we need better treatment options, now!

We estimate that about 2000-3000 people have SDS in the United States, and a similar number in Europe, many of them un- or misdiagnosed. Exact numbers are not available, due to the difficulties with diagnosis and tracking. This number is based on an estimated incidence of SDS of 1:70,000 live births and shortened life expectancy (median in the mid-40s).

Description & Symptoms

What is SDS:

Shwachman-Diamond Syndrome

Description & Symptoms

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Awareness Tools

Would you like to help raise awareness and funding for Shwachman-Diamond Syndrome? You have come to the right place!

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.