Explore

This Portal not only provides education, professional services and resources about FSHD, it also offers complimentary Saliva Research Test for participants wanting to sequence and check their DNA for any FSH mutations – making them eligible to partake in the FSHD Medical Research & Clinical Trial Readiness Program.

Welcome

Dear Friends,

Welcome to the FSHD Medical and Education Portal – an initiative of the FSHD Global Research Foundation. As global medical research advances, so too does our knowledge and understanding of FSHD and our reach towards clinical trial readiness programs.

The purpose of this Portal is to help educate individuals and their families living with FSHD on new and improved diagnostic technologies, share interesting global research publications, connect people with …

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The FSHD Global Research Foundation will act as a conduit to introduce you to testing and research facilities. If you wish to participate in any clinical testing, we will put you in contact with the researchers directly. Your data will not be held by this Portal, or testing facilities and, if requested will be subject to your consent.

This Portal is a catalyst to advance clinical trial readiness, offering diagnostic platforms and education to those living with FSHD and their families. By joining the Portal, you will be ask to complete questionnaires from time to time about you and your families experiences living with FSHD, to better enable us to understand your suitability for clinical trial readiness.

Should you elect to share your diagnostic data and patient journey to benefit medical research purposes you can elect to partake in the FSHD Global Research Foundation’s FSHD Portal Registry, and nominate to be notified once treatments and clinical trials are available in your region.

Note, the FSHD Global Research Foundation, will not share any personal information communicated through this Portal, at any time to a third party.

This platform has been built to educate and advance diagnostics to a global community in constant search for treatments and a cure for the debilitating disease, Facioscapulohumeral muscular dystrophy. Together we can change the world.

Regards,
Bill Moss AO
Founder & Chairman
FSHD Global Research Foundation

Natalie

Chairperson

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professional health services and assistance networks (who have experience with FSHD patients), and furthermore actively keep our community informed on current and proposed FSHD clinical trials, available to you.

While the FSHD Global Research Foundation focuses on finding treatments and an ultimate cure, this Portal centres on establishing a FSHD Registry, collating information on disease evolution and connecting our community with diagnostic platforms and furthermore clinical trial readiness programs.

Members of the Portal will be encouraged to order a complimentary FSHD Saliva Research Test sent to their home, to better understand their own DNA sequencing relating to FSHD. This test is available to anyone around the world, and is a pre-requisite for joining the FSHD Medical Research & Clinical Trial Readiness Program.

The Foundation acts as a conduit connecting you directly with the testing laboratory, as such the FSHD Global Research Foundation will not share any personal information communicated through this Portal at any time to a third party. Should you wish to upload your FSHD testing results to the Portal to assist with research, you can do so with the click of a button on our highly secure HIPAA compliant Portal.

I encourage you to explore this Portal, and become an active member of the FSHD global community, supporting the fight against FSHD.

Regards,
Natalie Cooney
Chairperson
FSHD Global Research Foundation

Your Portal Journey

Your Portal Journey

Community

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Diagnostics

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Education

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Treatment & Cure

FSHD Global’s Story

The Foundation values strong governance in its commitment to execute world’s best practise, medical research and leadership amongst the field of FSHD. With a mission to find treatments and a cure for FSHD, the Foundation is advancing towards drug developments and clinical trials aimed at preventing muscle wasting and improving quality of life for those living with FSHD.

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Founded in 2007 by businessman and philanthropist, Bill Moss AO, the Foundation created an innovative charity model, donating 100% of all tax deductible donations funding current and future medical research grants. The Foundation is a true success story, with no Government funding, the Foundation has raised over $10 million, funding over 45 medical research grants, across 10 countries.


When we find a cure – and we will – it won’t be because of any single person. It will be because of all of us, working together….but we still need your help to get there.

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services and education about FSHD, please sign in to create your private account.
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HIPAA Compliance

Please note this Portal is HIPAA compliant which ensures your personal information is securely protected.