Thank you to our wonderful community who have registered with our FSHD Medical Education Portal. We have received a wonderful response since launching the Portal in December 2020. The purpose of this initiative is to:

  • Roll out an FSHD Saliva Research Testing program nationwide to ascertain disease prevalence across Australia
  • Help educate individuals and their families living with FSHD on new and improved diagnostic technologies
  • Provide an accessible way for patients to test their DNA relating to FSHD, with testing kits delivered straight to their home
  • Assist FSHD patients to test if this hereditary disease is in their family tree
  • Share global research publications and global medical breakthroughs
  • Connect people with professional health services and assistance networks who are experienced with the disease
  • Actively keep the FSHD community informed on current and proposed FSHD clinical trials, with the opportunity to partake in future clinical trials
  • Create a FSHD Global Registry to connect diagnostic data which will aid medical research and link the community to the FSHD Clinical Trial Readiness Program
  • We would like to encourage our community to explore this Portal, and become an active member of the FSHD global community, supporting the ght against FSHD. Go to