Sunday, August 2nd, 2020 This year we're walking as one big team! This year, while respecting local health guidance, CCDS families, friends, researchers, and supporters worldwide will be walking in support of those […]
Keynote: Lessons Learned From 2 Years of the Vigilan Natural History Study Dr. Judith Miller, Ph.D., Children's Hospital of Pennsylvania Click Here for the Direct Webinar Link Dr. Judith Miller […]
Holiday Heroes is our annual fundraiser and this year we will be fundraising to support the continuation of Gene Therapy Advancement Awards in 2021 as well as drug development research. […]
CCDS Day 2021 is February 1st. How has CCDS changed your story? If you’d like to participate in our #CCDSDay2021 Campaign, send us a picture of your child/family and […]
February 28th is Rare Diseases Day. This year, we will raise awareness AND empower research! Stay tuned for the launch of our CreatineInfo Registry. Together we will search for answers […]
The ACD, in partnership with NORD, is launching a Natural History Study Patient-reported Registry on March 15th. Join the registry and help us further research for a better quality of […]
The Caregiver Session is scheduled one week prior to the main conference sessions and will focus on parent training in the following categories: supporting sibling relations and the non-CCDS sibling […]
Learn more about the Expert Panel webinar series and register here.
