On April 1st 2023, the annual meeting of families took place in Paris, as well as the general assembly of DEBRA France. 30 families and 60 participants were present to reconnect with this great tradition, which had been disrupted by the COVID-19 epidemic. These moments of exchange and gathering are of great importance because they make it possible to break with isolation and the burden of illness. Listening, sharing, peer support, discovery are all important levers in the process of recovery and support for families. Professionals from the medical sector and researchers were also present, in order to share their experiences and provide advice and best practices. They are also moments conducive to dialogue, which offer those present the possibility of freeing themselves from the mental burden and the daily suffering linked to the disease.
Fortunately, all is not gloomy. The joy of meeting up, discovering, imagining new solutions, celebrating successes and moving forward are the pillars of these encounters. Moments that offer us, the time of a weekend, the happiness of meeting and moving forward.
The program was dense, during the first morning the ordinary general meeting took place. This was an opportunity to review the actions undertaken and carried out by DEBRA France during the year 2022, followed by the election of the new board of directors. Many speakers followed one another to talk about gynecological follow-up, therapeutic perspectives, burden of EB, what’s a clinical trial, and why is that so complicated with EB to bring them to fruition. A convivial lunch followed this angular moment in the life of the associations. Discussions groups and workshops followed one another throughout the day. Speakers led workshops such as: "Taking care of yourself", "nursing care", "sophrology" as well as a support group dedicated to teenagers. The suite was placed under the aegis of sharing and celebration, various activities such as karaoke and blind tests punctuated the meal as well as the evening.
In addition, the news was shared that DEBRA France, in collaboration with the members of its medical board, is organizing the 4th National Epidermolysis Bullosa Meeting in Paris on November 9, from 10am to 4.30pm (Hôpital Saint-Louis). Several themes will be addressed:
- Pain management
- Nursing care at home
- Oral management and undernutrition
To subscribe: https://www.helloasso.com/associations/debra-france/evenements/4e-rencontre-des-professionnels-de-l-eb
Info: contact@debra.fr
