Shwachman-Diamond Syndrome Alliance
Eszter Hars and her husband became involved in the rare disease community because their daughter is affected by Shwachman-Diamond Syndrome (SDS). SDS is a rare genetic bone marrow failure syndrome that affects all systems of the body. The most devastating effect is the predisposition to leukemia (blood cancer), which is estimated to hit about 1 in 3 patients by age 30 and is typically fatal. As scientists and biotech entrepreneurs, they are applying their professional expertise to drive the development of life-saving therapies for all SDS patients.
As part of the Rare As One Network, SDS Alliance aims to build infrastructure and implement strategies that allow the research and patient communities to work synergistically toward the common goal: finding a cure for Shwachman-Diamond Syndrome in a timeframe that matters to patients today.