All Blogs & News

Apply today. SDS Alliance open a new qualitative research study -- the SDS Patient LENS Study -- to understand the unique lived experiences,

Join the community webinar and Q&A session to learn all about the EL-PFDD meeting on Shwachman-Diamond Syndrome and get answers about it all

Be a Speaker/Panelist! The FDA has accepted our request to hold an Externally-Led Patient Focused Drug Development Meeting for SDS on 6/4/25

In this issue: SDS-POPS 2024 covers a wider range of topics, including SDS patient voice, stories, film, and advocacy, and SDS research and

In this issue: SDS Alliance brings the patient voice to two scientific conferences in Paris, France this month. Read a brief overview here.

In this issue: Simple Fundraising Ideas to Support SDS Research and Make a Lasting Impact in the Fight for a Cure

In this issue: Why Individuals with SDS Face a Higher Risk of Diabetes and How Families Can Take Action to Support Health

In this issue: The SDS Alliance team is ready for Global SDS Awareness Day and Action Week! A recap of the CZI Science in Society meeting.

In this issue: The results of the 2024 Million Steps Closer to #CureSDS Challenges are in!