FSHD Europe organizes educational webinars for FSHD patients, caregivers, and patient advocates. These webinars aim to increase knowledge across a range of specialized topics within the FSHD field. We collaborate with clinical and research experts from neuromuscular centers in various European countries that are part of the FSHD European Trial Network. Each webinar lasts approximately one hour and includes an opportunity for participants to ask questions.
If you have a specific topic you would like to present or learn more about, please contact secretariat@fshd-europe.info. We will follow up with you accordingly.
Past FSHD Europe Webinars
Understanding FSHD
Understanding the disease mechanism and genetic diagnosis of FSHD is essential for patients, families, and patient advocates, as it forms the basis for accurate diagnosis, research progress, and future therapies.
In this webinar, Emiliano Giardina, geneticist and internationally recognized expert in neuromuscular and genetic disorders, provides a clear and accessible overview of:
– The underlying disease mechanism of FSHD
– The role of genetics in FSHD
– Current approaches to genetic diagnosis
– Practical implications for patients and families
The FSHD European Trial Network working group on Clinical and Genetic Diagnosis published a list of European reference centres for FSHD genetic testing as well as updated best practice guidelines on genetic diagnostics of FSHD.
Anything & Everything related to fundraising
Within the FSHD community, raising funds to enable national patient organizations to support patients, advance scientific research, raise awareness and advocate for better care is of vital importance. But how can a patient organization do this efficiently, in a structured way, and sustainably?
This session addresses the do’s and don’ts, common pitfalls, and many other key topics. There will be time reserved for Q&A, giving participants the opportunity to ask questions and exchange ideas.
Speaker Miriam Wagner Long, affiliated with the World FSHD Alliance and Project Mercury, has been a passionate fundraiser for over 22 years of experiences in fundraising and organizational development.
Target audience FSHD patients, caregivers and patient advocates