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Canadian Association for Glycogen Storage Disease
(and Frequently Asked Questions)
The Canadian Organization for Glycogen Storage Disease (CanadianAGSD) was created to help Canadian patients and their families affected with this rare disease.
Our purposes include: providing individuals affected with GSD and their families with access to information about the disease, its consequences and potential therapies; supporting research which contributes to the development of diagnostic tests and therapies (in Canada); and educating the health care community and the public about GSD; . (All of our purposes can be found in the Overview section).
Your support is both needed and appreciated. Our Board of Directors and Officers are volunteers. Canadian AGSD is an official Canadian non profit that has charity status with Revenue Canada.
#CureGSD #BeStrongStayStrong #CanadianAGSD
CLINICAL RESEARCH & TRIALS
For information on Beam Therapeutics clinical trial: A Phase 1/2 Dose-Exploration Study to Evaluate the Safety and Efficacy of Beam-301 in Patients with GSD Type 1a, visit here. (Recruiting: Currently only in US)
For information on the Moderna clinical trial: A Study of mRNA-3745 in Adults and Pediatric participants with GSD Type 1a, visit here. (Recruiting: Edmonton and Toronto)
To read the Ultragenyx clinical trial: Safety and Efficacy of DTX401, an AAV8-Mediated Liver-Directed Gene Therapy, in Adults With Glycogen Storage Disease Type I a (GSDIa), visit here. (Completed: Montreal)
CANADIAN AGSD SCIENTIFIC ADVISORY COMMITTEE
We are please to announce our volunteer committee members:
Dr. John Mitchell, Montreal Children's Hospital (Montreal, QC)
Dr. Sylvia Stockler, British Columbia Children's Hospital (Vancouver, BC)
Dr. Michal Inbar-Feigenberg, The Hospital for Sick Children (Toronto, ON)
Dr. David Weinstein, Weinstein Rare Disease and Clinical Developmental Consulting
Kathy Ross, RD, Florida, United States
Iris Ferrecchia, RN, Clinical Research Nurse at Connecticut Children's Medical Center