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November 2021

2021 Holiday Heroes

November 1, 2021 - January 1, 2022

Learn more about Holiday Heroes 2021 and make a donation today!

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December 2021

Virtual Town Hall: A Discussion with Ultragenyx

December 17, 2021 @ 3:00 pm - 4:00 pm MST

Do you have questions about the recent changes announced by Ultragenyx to their CTD clinical development program? ACD is hosting a virtual town hall event on December 17th from 2-3 pm PT with Ultragenyx representatives to answer your questions. We will hear from the following Ultragenyx team members: Marcus Andrews, PhD, Senior Director, Non-Clinical Sciences, Pharmacology/Toxicology Hilary Beggs, PhD, Executive Director, Program Team Leader Melanie Brandabur, MD, Senior Medical Director, Global Clinical Development Register and submit your questions here.

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February 2022


February 1

February 1st is #CCDSDay2022 and we want to share your story with the world. Send us a picture of your family and complete the following quote: “CCDS research success means…” Complete your submission here and we’ll raise our voices in 2022 to let researchers around the world know that our community is strong and ready to support their work.

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2/4 PaReNts Webinar

February 4 @ 8:00 am - 5:00 pm MST

Register for the webinar here. To learn more about the PaReNts project, visit our informational webpage.

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2/11 PaReNts Webinar

February 4 @ 8:00 am - 5:00 pm MST

Register for the webinar here. To learn more about the PaReNts project, visit our informational webpage.

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Rare Disease Day

February 28
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June 2022

Symposium: “What to Expect” Webinar

June 17 @ 10:00 am - 11:00 am MDT

“What to Expect at the Symposium” Zoom gathering! June 17th, 10:00 AM or 3:30 PM MDT. We’ll be sharing all the details of the symposium and Utah tips to help you feel prepared for the big event. Register today! The webinar recording will be made available for those unable to attend.

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2022 CCDS Scientific + Patient Symposium

June 26 - June 27

This conference is intended for members of the scientific and medical community, as well as the Cerebral Creatine Deficiency Syndromes (CCDS) patient and family community. Professionals will learn from families and patients while also presenting their experience and knowledge of GAMT, CTD, and AGAT disorders, allowing for a deeper understanding of CCDS in the medical community and helping pave the way for innovation through collaboration.

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August 2022

Walk for Strength 2022

August 20

Join us on Saturday, August 20th, 2022 for the ACD's 7th annual Walk for Strength! Visit our Walk for Strength 2022 page to learn more, set up your team and register!

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September 2022

CCDS Sibshops

September 24 @ 12:00 pm - 1:00 pm MDT

Calling all CCDS siblings! We're excited to announce that ACD is partnering with Sibshops to provide a space for siblings to connect and receive peer support in a fun environment. The next Zoom gathering will take place on 9/24 at 12:00 PM MDT and will be facilitated by Sibshops certified facilitator Jessica Kruger. Sign up today! 

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