Eszter Hars, Ph.D., President and CEO, SDS AllianceAug 12, 2020SDS Patient Stories and NewsCarter and Skye's Story: A short video for Maddie Riewordt's VisionCarter and his sister Skye both have Shwachman-Diamond Syndrome (SDS) and went through stem cell transplants, recently.
Eszter Hars, Ph.D., President and CEO, SDS AllianceAug 12, 2020SDS Patient Stories and NewsGracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.Gracie van Brunt – singer, songwriter, and rare disease advocate – shares her story in a podcast.
Eszter Hars, Ph.D., President and CEO, SDS AllianceJun 19, 2020SDS Patient Stories and NewsMax's Story: A short insight as part of the 2020 Jeans for GenesMax and his family are raising awareness for Shwachman-Diamond Syndrome and rare disease by participating again in the 2020 Jeans for Genes
Eszter Hars, Ph.D., President and CEO, SDS AllianceMay 23, 2020SDS Patient Stories and NewsGracie's Story: Finding my voice and insights into my BMTGracie - a young adult SDS patient in the US, shares her story about finding her voice and her bone marrow transplant.