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July 2018

Walk For Strength

July 1, 2018

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 to distribute, etc. at

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CCDS Scientific and Patient Symposium

CCDS Symposium 2018

July 26, 2018 @ 6:30 pm - July 29, 2018 @ 12:00 pm CDT
The Westin Austin Downtown, 310 E 5th St
Austin, TX 78701 United States
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April 2019

CCDS Workshop at SIMD

April 8, 2019 @ 1:30 pm - 5:30 pm PDT

For more information, and to register for this event, please visit

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September 2019

CCDS Workshop -Rotterdam

September 6, 2019 - September 7, 2019

Dr Gajja Salomons, Xtraordinaire, and ACD have the pleasure to host the 2019 Symposium on Cerebral Creatine Deficiency Syndromes “CCDS” in Rotterdam on Friday, September 6 and Saturday, September 7.

This symposium offers a unique opportunity for...

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March 2020

Swing Fore CCDS

March 21
$125 – $5000

Swing Fore CCDS A Charity Golf Tournament Benefitting The Association for Creatine Deficiencies' PatientStrong™

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August 2020

Walk for Strength 2020

August 2
$15 – $500

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 #quarantine2020 #keepcalmandwalkon *Register by July 4 to receive a "Keep Calm & Walk On" walk shirt! Register to Walk or Support a Team Registration Details…

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Community Social Hour

August 2 @ 1:00 pm - 2:00 pm PDT
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Keynote Speaker – Dr. Judith Miller

August 2 @ 2:00 pm - 3:00 pm PDT

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 departments at the Children’s Hospital of Philadelphia (CHOP), which is affiliated with the Perelman School of Medicine at the University of Pennsylvania. She is also…

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Virtual Conference 2020

August 7 - August 8

The Association for Creatine Deficiencies would like to invite you to attend the 2020 Cerebral Creatine Deficiency Syndromes (CCDS) Virtual Conference on August 7th and 8th, as well as the keynote talk on August 2nd. The goal of this meeting is to share the latest CCDS research and to broaden our research network. Invited talks will cover a variety of topics such as natural history data, computational analysis of mutations, structural insights, as well as new directions for treatments, including…

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September 2020

Global Genes Virtual Summit

September 10 - September 25

Global Genes was founded to empower patients, build communities, and drive forward momentum for rare diseases globally. ACD attends this summit every fall and we are excited to invite our families to join in this year on this virtual platform. This event is open to CCDS families interested in learning more about how we can advocate together for our three rare disorders. September 10 is an orientation for those who have not attended before. September 15-20 includes a variety of…

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