January 26, 2022, 20:49 GMT —
Choroideremia Research Foundation spearheaded ICRN’s formation to coordinate researchers from around the world to find a cure for rare inherited eye disease.
SPRINGFIELD, MA, UNITED STATES /EINPresswire.com/ — The International Choroideremia Research Network (ICRN) is a global alliance of researchers from around the world who are working in concert to accelerate scientific knowledge about choroideremia (CHM). Spearheaded by the Choroideremia Research Foundation (CRF) and launched in August 2021, the ICRN immediately formed four working groups to accelerate action toward its goal.
The network is composed of over 90 multi-disciplinary vision professionals with varied experiences, backgrounds, and interests from 25 countries, who share a passion to improve outcomes for patients with CHM. It’s a rare inherited retinal disease that causes progressive vision loss which may lead to blindness for which there is currently no treatment or cure.
The ICRN working groups and meeting dates for 2022 are as follows:
Pathophysiology/Mechanism of Disease Working Group, Thursday February 2 at 1pm EST
Team Leader: Vasiliki Kalatzis, PhD, Research Director, Institute for Neurosciences, French National Institute of Health (Inserm)
International Data Collection Working Group, Thursday March 3 at 1pm EST
Team Leader: Robert Hufnagel, MD, PhD, Chief, Medical Genetics and Ophthalmic Genomics Unit, National Institutes of Health, ClinGen/ClinVar
Female Carriers Working Group, Thursday March 17 at 1pm EST
Team Leader: Cynthia Qian, MD, Assistant Professor, University of Montreal, and Choroideremia Research Foundation Wheelock Award winner 2021
Therapeutics/Clinical Trials Working Group, Thursday March 31 at 1pm EST
Team Leader: Anand Swaroop, PhD, Neurobiology, Neurodegeneration & Repair Laboratory, National Eye Institute, National Institutes of Health
Membership in the ICRN is free and open to all interested clinicians and academic researchers that have an interest in CHM. For more information about ICRN or CRF, or to become a network member, please contact Kathi Wagner, Executive Director of CRF, at KathiWagner@curechm.org.
Choroideremia (CHM) is a rare inherited form of blindness affecting approximately 1 in 50,000 people. Due to its x-linked inheritance pattern males are most severely affected with females usually experiencing much milder visual impairment. Symptoms begin in early childhood with night blindness and restriction of visual field being the earliest noticeable effects, eventually progressing to complete blindness. An estimated 6,000 people in the United States and 10,000 in the European Union are impacted by Choroideremia. There are currently no approved treatments for Choroideremia.
About the Choroideremia Research Foundation Inc.
The Choroideremia Research Foundation was founded in 2000 as an international fundraising and patient advocacy organization to stimulate research on CHM. Since its inception, the CRF has provided over $2.5 million in research awards and is the largest financial supporter of CHM research worldwide. Research funded by the CRF has led to the development of a CHM animal model, the pre-clinical production of gene therapy vectors currently in clinical trials, and the CRF Biobank which stores tissue and stem cell samples donated by CHM patients. For more information, visit www.curechm.org