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February 2021

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

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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 creatineinfo.iamrare.org.

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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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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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