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Patient & Medical Advocacy

Patient & Medical Advocacy

Healthcare Advocacy

The FSHD Global Research Foundation was established with a single mission: to provide patients with a cure for FSHD. Since 2007, we have supported research worth millions of dollars, unlocking the mechanisms of the disease and identifying new opportunities for treatments.

We have reached a turning point for the disease, with record levels of industry involvement and several promising therapies on the horizon.

However, within the Australian healthcare system, people with FSHD still face many challenges – including poor access to clinical trials, slow regulatory approvals, and patchy reimbursement for healthcare costs. These barriers must be overcome, or else people living with FSHD will not benefit from the significant progress we’ve made.

So, in 2021, we expanded our focus to become Australia’s Peak Body for FSHD, and drive the systemic change needed to make sure Australians with FSHD can live the life they deserve.

Treatments & a Cure
FSHD Global Research Foundation is more than a funder of medical
research – we are true advocates for this debilitating disease.

Our Advocacy Programs

Parliamentary Friends of FSHD

FSHD Global hosts a Parliamentary Friendship Group at Parliament House in Canberra. The aim is to collaborate with the Federal Government to ensure Australians living with FSHD receive the care and support they need, and raise awareness of issues affecting patients.

To date, we have held three Parliamentary Friendship Groups of FSHD, in 2021, 2023 and 2024.

Project Mercury

There are several challenges facing people with FSHD when it comes to timely access to effective medicines:
  • The high failure rates of clinical trials.
  • That regulatory approvals don’t guarantee coverage of costs to the patients.
  • A lack of collaboration between FSHD patients and other key stakeholders to solve these problems
But we know the solution:
Learn about Project Mercury

What is Project Mercury?

Project Mercury is an open collaboration of stakeholders from across the globe, to overcome the challenges above and ensure effective therapies get to patients everywhere.

This collaboration takes place at the global level through a Global Task Force, and at the local level through Country Working Groups. This parallel global-local approach ensures resources are shared across the world, while local challenges are met with tailored solutions.

The Task Force and the Working Groups are all led by patient advocacy organizations of the World FSHD Alliance.

Project Mercury Goals

By 2025, Project Mercury aims to expand and optimize the worldwide clinical trial infrastructure; build a global cohort of 10,000 trial-ready, well-characterized patients; and remove the barriers that delay patient access to therapies after they are approved.

Our Role in Project Mercury

FSHD Global Research Foundation joined Project Mercury in 2023. We lead the Country Working Group for Australia, New Zealand and Singapore, to implement global and local strategies to meet the project goals.

World FSHD Alliance

World FSHD Alliance

FSHD Global Research Foundation is a member of the World FSHD Alliance and holds membership in the steering committee.

The World FSHD Alliance was established to share resources, strategy, and ‘speak in one voice’ for people living with FSHD everywhere. Together, we can accomplish much more in education, support, and advocacy.

Another key aim of the World FSHD Alliance is to increase the number of clinical trials into FSHD, and participation in those trials from across the globe. Through the Alliance, we are coordinating our engagement with the pharmaceutical industry, to speed up drug development, clinical trials, regulatory approval, and patients’ access to new therapies.

World FSHD Alliance Members

It is an open collaboration among stakeholders from across the globe coming together to overcome the challenges that could slow or prevent effective therapies from getting to patients everywhere. This collaboration takes place at the global level through a Global Task Force and at the local level, through Country Working Groups. The Task Force and the Working Groups are all led by patient advocacy organizations of the World FSHD Alliance. This global-local approach ensures customization of Project Mercury’s work at the local level while sharing resources at the global level.

Africa, Asia, Middle East & Oceania

The Americas

Europe

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