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September 2021

2021 CCDS Virtual Conference

September 10, 2021 - September 11, 2021

The 2021 CCDS Virtual Conference will be held virtually on September 10th and 11th, 2021. The meeting will cover two days of scientific talks by international researchers and physicians from around the world. The meeting is hosted by the Association for Creatine Deficiencies (ACD). The mission of the ACD is to advocate, educate, and promote research for patients and families coping with the effects of a creatine deficiency. Given our mission, we believe it is imperative to hold open and…

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October 2021

FDA Webinar: The Clinical Trials Process

October 22, 2021 @ 1:00 pm - 2:00 pm MDT

Register today! The FDA is presenting an important webinar to the CCDS community Friday, October 22nd, from 3:00-4:00 EST. Dr. Sheila Farrell, MD, MPH from the FDA’s Center for Drug Evaluation and Research will discuss the clinical trials process. Register here. 

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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

CCDS Sibshops

June 11 @ 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 first Zoom gathering will take place on 6/11 at 12:00 PM MDT and will be facilitated by Sibshops certified facilitator Jessica Kruger. Sign up today! 

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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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