info@fshd-europe.info

Get Involved!

Become member of FSHD Europe

Our members are national patient organizations who support FSHD patients or neuromuscular diseases in general.

More information on ‘How to become a member’ can be found be pressing the button below.

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Join patient registry

We encourage all FSHD patients to register yourself in a national patient registry, where one is available. Not all countries may have a specific FSHD patient registry, some have neuromuscular registries. Please contact the patient organization in your country or ask your healthcare provider to learn more about this. For more information on patient registries use the button.
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Participate in research

Although many breakthroughs and insights have been made over the past years, there is still no treatment available for FSHD. However, there are currently clinical trials taking place in Europe where patients can participate and increase the chance of finding a treatment. More information can be found on the Research page.
Go to Research

World FSHD Day

June 20th is World FSHD Day, which is a global initiative to raise awareness for FSHD. There are several ways that you can get involved and help support World FSHD Days. You can join the Orange Slice Selfies campaign which is the signature social media event to recognize World FSHD Day. Supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay.

You can download the World FSHD Day toolkit below.

For more information on ways to support World FSHD Day see World FSHD Day | FSHD Society

Download Toolkit

Donate

You can make a direct gift to support our work.

FSHD Europe

Account number:      1372.74.734

IBAN:                         NL33 RABO 0137 2747 34

BIC:                            RABONL2U

Thank you for your generous support!

Educational resources

Organizational support

FSHD Europe offers you organizational support, see for more information here 

FSHD Society

The FSHD Society is the world’s largest research-focused patient organization for FSHD. On their website you can find a lot of information on many different topics. They also provide an education centre called the FSHD University, please have a look at:  FSHD University | FSHD Society

TREAT-NMD

TREAT-NMD is a global network of experts in the neuromuscular field aiming to accelerate the development of effective treatments; and establish the best in diagnosis and care for people worldwide.

Resources and Support – TREAT-NMD

European Reference Network (ERN)

EURO-NMD is a European Reference Network for the thematic grouping of rare neuromuscular diseases (NMDs), a broad group of related disorders that represent a major cause of mortality and lifelong disability in children and adults. EURO-NMD provide educational webinars on a monthly basis to increase the knowledge around different specialist areas related to the neuromuscular field. Each webinar lasts approximately one hour with the opportunity for viewers to ask questions on the subject area.

Webinars – European Reference Network – EURO-NMD (ern-euro-nmd.eu)

Events – European Reference Network – EURO-NMD (ern-euro-nmd.eu)

EURORDIS

FSHD Europe is a member of EURORDIS, a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. The EURORDIS Open Academy accompanies patient advocates by offering rare disease-specific comprehensive training programmes that empower advocates with the knowledge, skills, and confidence they need to engage with different stakeholders as equal partners.

Learn with the EURORDIS Open Academy – EURORDIS Open Academy