Featured News & Events

Featured News

One Year Later: The SDS PFDD Voice of the Patient Report Is Published — and Your Voice Is Already at Work

The Shwachman-Diamond Syndrome Voice of the Patient report is now published and submitted to the FDA. Learn what the EL-PFDD meeting captured, how the report is used, and what comes next.

New resource guide: SDS Alliance's free fundraising guide helps families and supporters raise funds for Shwachman-Diamond Syndrome research — on their own terms, at any level.

How to Fundraise for Shwachman-Diamond Syndrome Research: A Free Guide for Families and Supporters

SDS Alliance's free fundraising guide helps families and supporters raise funds for Shwachman-Diamond Syndrome research — on their own terms, at any level.

SDS Alliance garden illustration showing collaboration between researchers, funders, and the patient community toward a cure for Shwachman-Diamond Syndrome

SDS Alliance Receives Grant from RTW Foundation to Advance Prime Editing Gene Therapy for Shwachman-Diamond Syndrome

SDS Alliance announces a grant from RTW Foundation supporting prime editing gene therapy research for SDS at Boston Children's Hospital. #CureSDS

2025 Impact Report: How the SDS Community Is Advancing Research Toward Therapies

Read the 2025 SDS Alliance Impact Report to see how patient voice, research strategy, and collaboration are advancing therapies for Shwachman-Diamond Syndrome.

SDS Alliance awarded PCORI Engagement Award funding to build capacity for patient-centered CER for Shwachman-Diamond Syndrome.

We are pleased to announce that the Shwachman-Diamond Syndrome Alliance (SDS Alliance) has been awarded funding through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support building capacity for patient-centered Comparative Clinical Effectiveness Research (CER) on Shwachman-Diamond Syndrome (SDS), or Project PACER for short.

young adult person living with Shwachman-Diamond Syndrome shares his lived experience with the FDA at SDS PFDD meeting

FDA provides positive feedback on the SDS EL-PFDD meeting, valuing the Patient Voice

Externally-Led Patient Focused Drug Development Meeting for Shwachman-Diamond Syndrome (SDS PFDD meeting) successfully delivers patient voice to the FDA, drug developers, and other stakeholder.