FSHD Europe organizes educational webinars six times per year to increase knowledge about various specialized areas within the neuromuscular field. Each webinar lasts approximately one hour and offers participants the opportunity to ask questions about the topic.
In addition, within the European Trial Network, we collaborate with medical specialists from neuromuscular centers across various European countries.
If you have a specific topic you would like to present on, please contact secretariat@fshd-europe.info. We will then get in touch with you.
Past FSHD Europe Webinars
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 more than 16 years.
Target audience FSHD patients, caregivers and patient advocates
Logistical Information
The webinar takes place on the last Wednesday of the month at 7:30 pm CET, during the months of March, April, May, October, November, and December.
FSHD Europe uses Microsoft Teams Webinar software to ensure that the webinars run smoothly throughout the full hour. Some of the features Microsoft Teams offers include:
- Participants can use the chat function to communicate with each other. Questions for the panel members should be submitted via the Q&A function; these questions will be answered at the end of the session. As a participant, you may be given the opportunity to ask your question verbally, but if you prefer not to do so, the moderator will read the question aloud and the panel member will respond.
- Panel members have the option to mute or unmute their microphones.
- Participants are able to share their screen.
- The webinar will be recorded and made available online afterward, both on our website www.fshd-europe.info and on the FSHD Europe YouTube channel (FSHD Europe – YouTube).
- During the webinar, one or more members of the coordination team will be present to assist with any technical issues.
- In addition, a 5–10 minute preparatory session is offered prior to the webinar, allowing the speaker to become familiar with the controls and ensuring sufficient time to set everything up properly.