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 a quote answering this question. Email faith@creatineinfo.org. Please also sign and complete this release form, giving us permission to share your picture and quote.
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 and help move research forward. To learn more, contact registry@creatineinfo.org or sign up for updates here: https://bit.ly/ACDpatientregistry.
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 life for those impacted by Creatine Deficiencies. Join at creatineinfo.iamrare.org.
"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!
