FSHD Global Research Foundation’s “FSHD Medical Education Portal”

The FSHD Global Research Foundation focuses on finding treatments and a cure for FSHD. In doing so, they fund world-class medical research, awareness, and education. In 2020, they brought research, awareness, and education together through the creation of the “FSHD Medical Education Portal”.

The Portal is a ‘one-stop shop’ for people living with FSHD. It provides education on advancements in the disease as well as a platform to connect people to professional health services that work with and understand FSHD. As the Foundation works towards finding treatments and a cure, they are encouraging the neuromuscular community to join the FSHD Global registry, to enable them to connect people living with FSHD to medical research institutions and biotechs researching and/or recruiting for clinical trial readiness programs.

They have also partnered with Peter Jones Lab at the Reno School of Medicine (University of Nevada, USA) to enable the Portal to coordinate the provision of an FSHD Saliva Research Test kit directly to the homes of any Australian seeking to be screened for FSHD. The kit utilises advanced technology to better understand the DNA sequencing relating to FSHD. The kit is available free of charge, with only the cost of postage to return the completed test to the USA required. It can differentiate between FSHD type 1 and type 2, which can often be a difficult
diagnostic journey for patients in Australia to navigate.

You are invited to explore the Portal and take part; because together, we can find a cure. To register go to www.fshdmedicalportal.org