AMADYS, the French association for dystonia patients, gathers its volunteers every two years for a face-to-face day. This year it was January 24th in Paris.
Volunteers include our regional delegates, specialists with specific missions (social networks, etc.), and board members.
Guest speakers may include specialists on medical or care issues relating to dystonia and children’s dystonia, or our psychotherapist trainer.
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- Volunteers group
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- Social Media team
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- Lunch time
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- Delegates meeting
At a time when video conferencing is so practical and inexpensive, it’s important to bring together the volunteers who keep an association going. It helps to:
– Unite
– Recognize their actions and involvement
– Create links and group synergy
– Feel less alone in their region and role
– Exchanges with the Board, enabling volunteers to understand what is at stake for the administrators, and the latter to understand the day-to-day realities of patients
– Exchange best practices in their mission
– Pass on knowledge and experience from older members to new ones
– Learn from specialists
– Familiarise themselves with the association’s tools
– Understand the association’s environment and its various players and partners
– Identify needs and training requirements
– Discuss complex situations encountered with our psychotherapist trainer, who usually trains volunteers
Breaks and meals are also a great way to get to know each other better and make new friends.
Volunteers are generally sad to leave each other at the end of the meeting and look forward to the next one.
Of course, this type of meeting requires organisation and resources, however we recommend these face to face days, which are full of emotion, information and rich constructive exchanges, to the Dystonia Europe national members.
For AMADYS Edwige Ponseel, President 
AMADYS and Dystonia Europe
