We cover the answers to many genetic testing questions, including where to get a genetic test, on the FSHD Society's dedicated webpage: Tests génétiques.
For a complete list of genetic testing labs worldwide, visit the Registre des tests génétiques NCBI.
US & Canada: To find a genetic counselor, ask your neuromuscular specialist or search www.findageneticcounselor.com
If you still have questions after visiting the webpages above, please submit your inquiry below.
For information on current FSHD trials and studies, please visit the FSHD Society's Current Trials and Studies webpage. You will find a list of all trials and studies currently being conducted on FSHD patients. Each trial and study has its own dedicated webpage with simplified information that has been written and reviewed by our staff and the study team.
Additionally, if you are interested in learning more about clinical trials in general, we have a clinical trial education hub with links to several helpful resources: Clinical Trials Education.
We have a multitude of resources dedicated to early-onset FSHD: FSHD à début précoce.
Included in these resources is a link to our Parents' Roundtable Chapter, which was formed by parents of children with FSHD with the goal of connecting other parents and family members of children with FSHD.
Please explore this helpful resource regarding nutrition for patients with FSHD: Une meilleure nutrition pour la FSHD.
If you still have questions after visiting the webpage above, please submit your inquiry below.
Our Volunteer Navigator, Wade, published a wonderful blog post on college accessibility that offers a realistic perspective on navigating the accommodation process in higher education: College is Possible, Preparation is Necessary.
Submitting your inquiry below will connect you with Wade.
Please explore any of the blog posts that we have published about pain management over the years:
Please feel free to check out the FSHD Society's dedicated webpage: Équipement adapté. This page includes several wonderful resources, including carex.com, which has buyer's guides for various types of adaptive equipment.
In addition, you may explore any of the blog posts that we have published about assistive technology over the years:
We cover the answers to many care coordination questions on the FSHD Society's dedicated webpage: Coordination des soins.