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FSHD Global Research Foundation funds the world’s best medical research into Facioscapulohumeral muscular dystrophy. As we work towards finding treatments and a cure, this FSHD Medical and Education Portal focuses on encouraging our community to join the FSHD Global Registry, and furthermore connects people living with FSHD to medical research institutions and biotechs researching and/or recruiting for clinical trial readiness programs.
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.
Join the FSHD Medical Research & Clinical Trial Readiness Program
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 …
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
Chairperson
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
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.
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.
To unlock the FSHD Medical and Education Portal in order to access resources,
services and education about FSHD, please sign in to create your private account.
Already a member? Login in here
Please note this Portal is HIPAA compliant which ensures your personal information is securely protected.
The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from adult and child patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.
Visit Australian Neuromuscular Registry
The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from adult and child patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.
Stay up to date with the latest news, campaign’s and medical research by signing up to the FSHD Global Research Foundation newsletter today!
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Global Research
Foundation’s Newsletter.
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1. Introduction
1.1 FSHD Global Research Foundation Limited (ABN 79 128 037 614) (FSHD) operates this website, www.fshdmedicaleducationportal.org (hereinafter referred to as the Site).
1.2 The Terms of Use of the Site include these Terms and Conditions, FSHD’s Privacy Policies and any other terms and conditions that are contained in or are linked to the Site including all updated versions of them.
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(e) violate any proprietary rights, property rights, copyrights, privacy or intellectual property rights of FSHD or any other person;
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(g) solicit any unauthorised financial benefit from any other user of the Site; or
(h) copy, reproduce, retransmit, create derivate works, sell or display or in any way exploit the Site without the prior express written authorisation of FSHD.
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(a) reporting your conduct to Australian or New South Wales regulatory officials such as the New South Wales Police Force or the Australian Federal Police;
(b) institute technological barriers however FSHD deem necessary;
(c) commence Court proceedings seeking damages from you; or
(d) commence Court proceedings seeking injunctive and/or declaratory relief against you.
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5.2 All content included on the Site, including but not limited to data, information, content, material, text, images, audio, videos, logos, button icons, is the intellectual property of FSHD, its associated entities or related entities or its third party content suppliers. Use of the Site does not transfer any intellectual property rights or copyrights to the user.
5.3 FSHD grants users of the Site revocable permission to download copyright material on the Site for their own personal use provided that such use is non-commercial and not to obtain any financial benefit whilst excluding FSHD.
5.4 You must not reproduce, copy or alter information, data or content contained on the Site without the prior express written authority of FSHD.
6. Third Party Content
6.1 You acknowledge that the Site may from time to time contain information, data and content uploaded by third parties (Third-Party Content).
6.2 FSHD does not in any way monitor the Third-Party Content on the Site and makes no warranty as to the accuracy of such Third Party Content. For that purpose, FSHD is not liable or responsible for any matters pertaining from the Third-Party Content whether directly or indirectly.
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7.5 Donations by individuals can be made in the form of one-off donations, regular gifts or bequests. FSHD will determine where the funds are directed within its services. If a donation is designated to a specific project, FSHD will use reasonable endeavours to direct that donation to the designated project but is not obligated to comply with such requests. Donations of gifts in kind will also be directed as determined by FSHD.
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9. Disclaimer
10. Amendments or variations
10.1 FSHD may, from time to time, make changes to these Terms and Conditions, or to specific functions of the Site. It is your responsibility to monitor these Terms and Conditions from time to time to ensure that you remain compliant with what is required from you when using the Site or otherwise. Changes to these terms and conditions will be effective immediately upon publishing on this website and separate notification will not be given to you individually.
11. Severability
12. Termination
13. Governing Law
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