"How to read your genetic test report & ClinGen Data Sharing Program" Speakers: Juliann Savatt, Clinical and Research Genetic Counselor at Geisinger, Laura Trutoiu, Ph.D., Director of Research at Association for Creatine Deficiencies, Sofia Balog, Patient Registry Coordinator at Association for Creatine Deficiencies. Have you wondered about your child’s specific mutation of creatine deficiencies? Do you […]
Have you wondered about your child’s specific mutation of creatine deficiencies? Do you want to know what missense mutations are? Join ACD and ClinGen on June 9th at 12 pm PT for a webinar for parents and caregivers to learn about: - How to read your genetic testing report - How to participate in the ClinGen Data Sharing […]
Rare Disease Week is July 14-22. EveryLife Foundation invites you to attend virtually on Capitol Hill this year. By attending and participating in different events, you will have the opportunity to meet and network with rare disease advocates from across the country and your own state, share your rare disease story and meet with your […]
Join us on Saturday, August 21st, 2021 for the ACD's sixth annual Walk for Strength! Click here to register!
The 2021 CCDS Virtual Conference will be held virtually on September 10th and 11th, 2021. The meeting will cover two days of scientific talks by international researchers and physicians from around the world. The meeting is hosted by the Association for Creatine Deficiencies (ACD). The mission of the ACD is to advocate, educate, and promote […]
Register today! The FDA is presenting an important webinar to the CCDS community Friday, October 22nd, from 3:00-4:00 EST. Dr. Sheila Farrell, MD, MPH from the FDA’s Center for Drug Evaluation and Research will discuss the clinical trials process. View the recording here.
Learn more about Holiday Heroes 2021 and make a donation today!
Do you have questions about the recent changes announced by Ultragenyx to their CTD clinical development program? ACD is hosting a virtual town hall event on December 17th from 2-3 pm PT with Ultragenyx representatives to answer your questions. We will hear from the following Ultragenyx team members: Marcus Andrews, PhD, Senior Director, Non-Clinical Sciences, Pharmacology/Toxicology Hilary […]
February 1st is #CCDSDay2022 and we want to share your story with the world. Send us a picture of your family and complete the following quote: “CCDS research success means…” Complete your submission here and we’ll raise our voices in 2022 to let researchers around the world know that our community is strong and ready to […]
Register for the webinar here. To learn more about the PaReNts project, visit our informational webpage.
