Fragile X Research Foundation of Canada’s Mission: Transforming the lives of individuals with Fragile X, their families, and the networks of professionals who serve them. We are a volunteer-based organization that facilitates community education, awareness and advocacy, as well as basic and clinical research into treatments of Fragile X and it’s related conditions.
Vision: A world where Fragile X is recognized and supported in all aspects of health and social care, with effective and accessible treatments.
Let’s give Fragile X a voice.
Latest Fragile X new: more info on building our community connections https://www.fragilexcanada.ca/1033-2/
Call for Board of Director Nominations.
As part of an ongoing process of renewal, and with an expanded mandate, we are looking for a few new Board members to help direct the Foundation’s future advancement. We are seeking individuals with competencies in fundraising, community engagement or communications. Nominations should be forwarded to: nominations@fragilexcanada.ca We are especially encouraging someone to join our Board who can maintain and update our website (WordPress). We are a volunteer-based organization that facilitates community education, awareness and advocacy, as well as basic and clinical research into treatments of Fragile X and its related conditions. Our vision is of a world where Fragile X is recognized and supported in all aspects of health and social care, with effective and accessible treatments.
FMR1 gene name change
The FMR1 gene and FMRP protein have officially been renamed to fragile X messenger ribonucleoprotein 1. Thanks to the European Fragile X Network for leading the efforts to change the name of the Fragile X gene and protein.
Mailing Adress
Fragile X Research Foundation of Canada has a new Mailing Address: 777 Tapscott Rd., Scarborough ON M1X 1A2 This address is for mail only.
Do you have some time to share with us? Can you help advance: research, support, awareness, advocacy, and community connections? Please take a moment to fill in the survey https://forms.gle/xZEKRKL1h8RrFeYC6 to help us identify ways to include you in our community....
Metformin Trial in Canada and the USA.
For more information go to http://metforminfxs.com/about-the-trial.html
Ontario Health Carrier Screening – Fragile X Call for Participation – Carrier Screening
We want to hear from you!
What is the opportunity? Ontario Health is currently reviewing a Carrier Screening program for Fragile X and other genetic conditions.
Carrier screening for some genetic conditions is available and publicly funded for some people (e.g., based on family history, ethnicity), but is currently not widely offered to everyone. A key part of this review is to make sure the lived-experience of patients is considered.More Information: https://www.fragilexcanada.ca/call-for-participants-ontario/
