All Blogs & News

Dec 8

SDS-POPS 2024 Recordings and Resources Now Available! SDS Alliance Blog 2024-12-08

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

Jul 7

Octavian's SDS Story: A Rare Gem with EFL1

"We have reached the stage of acceptance and trying to live life the fullest despite SDS" Shares Octavian's dad, Raul. Read this Romanian...

Mar 3

Alex's SDS Story and Diagnostic Odyssey (US)

"My journey as a mother of a child with a rare disease began when I had my 20-week ultrasound while pregnant with my son Alex", shares...