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 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.
Bill Moss AO
Founder & Chairman
FSHD Global Research Foundation
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.
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.
TERMS AND CONDITIONS
By browsing, accessing or otherwise using this website or any data or content from this website, you agree to be irrevocably and unconditionally bound by these Terms and Conditions.
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).
2. Consent to supply and use personal information
2.1 You acknowledge that:
(a) by using the Site, you may be requested from time to time to complete questionnaires/surveys and supply personal information when registering as a patient or user of the Site;
(b) you are not obliged nor is it compulsory for you to complete any such questionnaires/surveys or supply personal information to FSHD;
(c) if you do not wish to complete the questionnaires/surveys and/or registration information, you may not be able to access certain parts of the Site or the Site at all;
(d) if you choose to complete any such questionnaires/surveys and/or registration information, you do so on a voluntary basis and agree that you have not been coerced, forced, compelled or pressured by any third party to do so; and
(e) by completing such questionnaires/surveys and/or registration information, you consent to FSHD collecting, holding, using and/or disclosing your personal information in accordance with FSHD’s Privacy Policies and all applicable laws, regulations, rules and principles.
3. No warranty
3.1 FSHD and its contractors are responsible for maintaining the Site and all publications, content, data or the like uploaded on the Site and make no warranty as to the accuracy or reliability of the information contained therein. This extends to any content, data or information generated or uploaded to the Site by or on behalf of FSHD and/or any third party and/or any user or subscriber to the Site.
3.2 The content, data or information generated or uploaded to the Site by or on behalf of FSHD and/or any third party and/or any user or subscriber to the Site is not and does not constitute any form of medical advice nor should it be relied upon as medical advice. If you require any medical advice, please consult your health care professional.
3.3 FSHD, its associated entities, related entities, officers and employees are not liable or responsible for any loss or damage which may be caused to any recipient by directly or indirectly relying on anything contained in or omitted from our website or any information or data contained therein.
3.4 You acknowledge that you access the Site at your sole and absolute risk and by accessing the Site you expressly and irrevocably release FSHD from any and all liability which may accrue as a direct or indirect result of your access and access to the Site and reliance upon any data or information therein.
4.1 By browsing, accessing or otherwise using this website, you warrant and agree that you must not and will not:
(a) use any device, software, hardware, process or any other technology of any means to access, retrieve, scrape or index the Site or any information, content or data contained therein;
(b) interfere with the operation of the Site by any means, through any technology or through any third party;
(c) cause excessive and burdensome internet traffic to the Site or the FSHD infrastructure;
(d) use any data, information or content of the Site to compete with FSHD in any capacity whatsoever, whether by website or otherwise;
(e) violate any proprietary rights, property rights, copyrights, privacy or intellectual property rights of FSHD or any other person;
(f) violate these Terms and Conditions or any New South Wales or Australian law, regulation, requirement or code of conduct;
(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.
4.2 You acknowledge that if you fail to adhere to the restrictions set out in clause 4.1 above, FSHD may proceed with any of the following actions against you:
(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.
4.3 You must indemnify FSHD and its related associated entities from any loss suffered as a direct or indirect result of your contravention of clause 4.1 including but not limited to damages, costs, legal expenses, disbursements, fees, charges and the like.
5. Copying of Data
5.1 This clause is subject to the Copyright Act 1968 (Cth) and nothing in this clause is intended to affect or alter the operation of the Copyright Act 1968 (Cth). In the event of an inconsistency between this clause and the Copyright Act 1968 (Cth), the Copyright Act 1968 (Cth) shall prevail to the extent of that inconsistency.
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.
6.3 You rely upon Third Party Content on this website at your sole and absolute risk and you acknowledge that FSHD makes no express or implied representations as to the Third-Party Content or the accuracy thereof.
6.4 You are responsible for making your own independent enquiries in respect of the Third-Party Content on the Site. You acknowledge that the Third-Party Content does not necessarily represent the view of FSHD.
6.5 You release and hold harmless FSHD from any and all liability arising from any Third-Party Content on the Site.
7.1 FSHD is registered as a charity with the Australian Charities and Not for Profits Commission.
7.2 All monetary amounts and transactions on the Site are stated in Australian Dollars (AUD).
7.3 By completing a donation, you certify that you accept these Terms and Conditions and FSHD’s Privacy Policies.
7.4 We only use your information to process your donations and communicate with you about our charitable objectives.
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.
7.6 FSHD can provide official receipts for approved donations of $2.00 or more. Donors receive a receipt for each donation, unless otherwise requested. FSHD accepts anonymous donations but is unable to issue a tax-deductible receipt to the donor in such circumstances.
8. Online donations
8.1 The Site is enabled for online donations using a secure donation server. However, despite the security on the Site, you should be aware that there are risks in transferring information across the internet.
8.2 We record on our fundraising database the donor’s name, address, email, telephone and amount donated. Our fundraising database is protected by secure user IDs and passwords, to help protect it from misuse, unauthorised access, modification or disclosure. For more details on the collection and use of donor data, please see our Privacy Policies.
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.
13. Governing Law
13.1 You irrevocably agree that by using this Website and subsequently, your acceptance of these Terms and Conditions, that these Terms and Conditions are governed by and construed in accordance with the laws of New South Wales and Australia.
13.2 You agree, to submit to the non-exclusive jurisdiction of the Courts of New South Wales and Australia.