Getting the support you and your health profesionals need
The Foundation is thrilled to release a range of educational toolkits for patients, GP’s and Allied Health Professionals. Our goal is to empower our community when championing for support within the medical world.
In September 2015 FSHD Global convened a workshop of 13 leading international and Australian clinicians to develop a clinical practice guideline on FSHD. The guideline covers diagnosis and management of FSHD and sets out the standard of care that people with FSHD in Australia should expect from their care team.
From this, FSHD Global has created a set of free and accessible educational tool kits for people living with FSHD and health care providers.
The “Living with FSHD” booklet covers the care that you should expect from your healthcare team, steps for diagnosis and understanding test results, guidance on communicating with health professionals and some handy tools that may help make appointments more productive.
The other booklets are great resources to take to your health care providers to help them better understand the genetics of this disease, symptoms, prognosis and the effective management of FSHD.
Download and share:
Update: evidence based guideline summary for FSHD
Our goal is to ensure excellence in diagnostic methods and clinical management, and equal access to clinical trials and new therapies, for all individuals in Australia and New Zealand affected by neuromuscular disorders.
We can achieve our vision by establishing a cohesive, integrated neuromuscular network which enables people to work together across Australia and New Zealand, for the well-being of patients.