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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, 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  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, 2021 @ 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 or sign up for updates here:

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March 2021

CreatineInfo Registry Launch

March 15, 2021

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

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June 2021

ACD – ClinGen Webinar

June 4, 2021 @ 12:00 pm - 1:00 pm PDT
Zoom Webinar

"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 want to know what missense mutations are? Join ACD and ClinGen to learn about: How to read your genetic testing report How to participate in…

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ACD ClinGen Webinar: How to Read Your Genetic Report

June 9, 2021 @ 1:00 pm - 2:00 pm MDT

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 Program - Your questions answered on a Live Q&A Session Speakers: Juliann Savatt, Clinical and Research Genetic Counselor at Geisinger, Sofia Balog, Patient Registry Coordinator at…

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July 2021

Rare Disease Week

July 14, 2021 @ 8:00 am - July 22, 2021 @ 5:00 pm MDT

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 Members of Congress and/or their staff, and earn points for participating in Rare Disease Week. The top 50 point-earners from the week will win a grant from $1,000…

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August 2021

Walk for Strength 2021

August 21, 2021

Join us on Saturday, August 21st, 2021 for the ACD's sixth annual Walk for Strength! Click here to register!

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