Rare Disease Day Fundraising Challenge

In honor of Rare Disease Day on February 28, 2019, we’re challenging YOU to show your support for SDS patients and DONATE ANY AMOUNT to help patients afflicted with Shwachman-Diamond Syndrome.

Please click the graphic below to help us reach our goal of $5,000 before February 28, 2019.

donate button

Thank you very much for your generous donation!


Here are a few statistics and facts to illustrate the breadth of the rare disease problem worldwide, according to Global Genes, Allies in Rare Diseases.

  • In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group.
  • 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
  • Approximately 50% of rare diseases do not have a disease-specific foundation supporting or researching their rare disease

The SDS community is extremely lucky to have a wonderful foundation supporting and researching our rare disease. The Shwachman-Diamond Syndrome Foundation is a patient advocacy organization whose goals are to advocate and fund research towards improved treatment and a cure.