Past Events from February 27, 2024 – February 27, 2024 › Community Events › – Association for Creatine Deficiencies

Rare Disease Day

Rare Disease Day Wednesday, February 28, 2018 CCDS are considered rare disorders and the ACD is proud to support Rare Disease Day. Help us join with other rare disease groups in spreading Rare Disease and CCDS Awareness on February 28, 2018. Rare Disease Day is a worldwide initiative. For more information on this international event, […]

Walk For Strength

Walk For Strength June 9, 2018 Registration is now open for the third annual Walk for Strength. This walk is meant to be participated in by all CCDS families in their local communities. Your group may be as small as 1 or as large as you can recruit! Email us for more ideas and flyers […]

Walk for Strength 2020

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 affected by GAMT, AGAT, and CTD. Hold your family's walk when and where it suits you and join us afterward at the Community Social Hour. #socialdistance […]

$15 – $500

Keynote Speaker – Dr. Judith Miller

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 is a clinical psychologist with 25 years’ experience in developmental disorders. She has a joint appointment as Assistant Professor in both the Psychiatry and Pediatrics […]

Free

Holiday Heroes Fundraiser

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. Visit our Holiday Heroes page to learn more and donate now! Learn more about the initiatives funded by the 2020 Holiday Heroes at ACD's research […]

CCDS Day 2021

  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.

Rare Disease Day 2021

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.

CreatineInfo Registry Launch

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.

2023 CCDS Virtual Conference – Caregiver Session

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 experience, sleep training for CCDS patients, and identifying and managing CCDS behavior challenges. Visit the conference page and register today by clicking here!