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August 2020

Walk for Strength 2020

August 2, 2020
$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, 2020 @ 1:00 pm - 2:00 pm PDT
Free
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Keynote Speaker – Dr. Judith Miller

August 2, 2020 @ 2:00 pm - 3:00 pm PDT
Free

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, 2020 - August 8, 2020
Free

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, 2020 - September 25, 2020

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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Newborn Screening Bootcamp- EveryLife Foundation

September 30, 2020 - October 28, 2020

The EveryLife Foundation is dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. In this spirit, EveryLife is hosting a weekly one hour "Newborn Screening Bootcamp" virtual event each Wednesday from September 30 - October 28. This is a great opportunity to learn more about the newborn screening system and how we can work together to get GAMT added to all newborn screening panels universally. Check out the weekly offerings and…

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November 2020

Holiday Heroes Fundraiser

November 1, 2020 - December 31, 2020

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 strategy page and the Gene Therapy Consortium page.

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February 2021

CCDS Day 2021

February 1

  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 [email protected]  Please also sign and complete this release form, giving us permission to share your picture and quote.

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Rare Disease Day 2021

February 28 @ 8:00 am - 11:30 pm MST

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 [email protected] or sign up for updates here: https://bit.ly/ACDpatientregistry.

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March 2021

CreatineInfo Registry Launch

March 15

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.

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