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September 2020

Newborn Screening Bootcamp- EveryLife Foundation

September 30 - October 28

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 - December 31

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 another special research project to be announced. Look for more information to be posted in the coming weeks. 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

On February 1, 2021, join us in raising awareness of the three CCDS- AGAT, GAMT, and CTD. This year's shirt "Powered by Creatine" will be available in the ACD shop soon. Submit a family picture to info@creatineinfo.org by January 31, 2021, with a 1-2 sentence quote about how your family has found power in their CCDS diagnosis and we'll feature you on social media. Share our post on your own social media feeds and you'll be giving a shout out…

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June 2021

CCDS Scientific + Patient Symposium 2021

June 26, 2021 @ 8:00 am - June 29, 2021 @ 5:00 pm MDT
$15 – $250

2020 Symposium Rescheduled The ACD has been closely monitoring the spread of COVID-19 and working with our scientific medical advisors, in addition to following recommendations from the Centers for Disease Control (CDC) and World Health Organization (WHO), on precautions surrounding travel and large events. After careful consideration and at the advice of our scientific advisors, the ACD has decided in the best interest and health of all parties, to postpone the 2020 Scientific + Patient Symposium. We are saddened to…

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