Social Media Listening
An article has just been published in JEADV :
Patients’ testimonies, feelings, complaints and emotional experiences with dermatoses on open social media:
“What about talking…….about skin Disorders ? “
What about talking … about skin disorders ? :
The French Federation for Skin (FFP) has just published a booklet for children (In French). Fruit of work with children with or without a skin disorder, with an adapted design made by the organisation « The Little Citizens », it perfectly answers the children’s questions about skin disorders and aims to get rid of bullying for those who suffer from those disorders.
Dave Jacob’s interview on Grey Genetics Patient Stories Podcast
Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics Patient Stories Podcast on 30th January 2024.
He recounts his diagnostic journey, which ultimately led to a diagnosis of Cutis Laxa.
He shares how his personal experience as a rare disease patient inspired the inception of both ThinkGenetic Inc. and ThinkGenetic Foundation.
Give a listen
World Skin Health Coalition (WHSC)
WHSC gathers together all stakeholders concerned with the health of the skin : patient organisations, health professionals, medical and research societies and industrial partners, to strengthen our collective power in order to raise awareness on the global impact of dermatological disorders and conditions and put them at the top of health policies’ agendas. We are members of the coalition.
CONECT Project
CONECT Project (Cardio-Ocular NEtwork Connective Tissue)
gathers together several organisations dedicated to connective tissue rare disorders with cardiovascular involvement : Arterial Tortuosity Syndrome, Marfan Syndrome, Ehlers-Danlos Syndrome, Cutis Laxa, Loeys-Dietz Syndrome, etc… Initiated by the American Patient Organisation for Arterial Tortuosity (ATOF-ATS), it aims to build a collaboration to evaluate the common issues in a population with similar patients, to inform on possible treatments that are not widely known, to ensure that patients have a minimum of scientific and clinical knowledge on their disorder to be able to give their informed consent to take part in research programmes and to improve their quality of life. Online webinars have already been set up, for patients as well as health professionnals.
NEW MEMBERS
555
That’s the number of patients who joined CLI, with the new members Kim, Tigui-Jamilah, Clare, Ali et Yassin, Isla, Marie-Astrid and her brother, Soumaya, Jonas et Goundoba.
Welcome to all of you. We are happy you found and joined us.
Our Big Cutis Laxa Family is here to help you, support you and answer your questions.
Virginie BROS-FACER, new CEO of Eurordis
In September 2023, Yann Le Cam announced his decision to retire from the position of CEO of Eurordis. Virginie Bros-Facer will then take over in March 2024. She had previously worked with Eurordis as Scientific Director before joining various organisations where she worked in the field of research and patient engagement for rare disorders.
In her own words, she is delighted to be back in Eurordis.
On-Line Activities
Today, a great number of meeting, working groups, workshops,etc are on line.
Here is a list of what happened during the last 6 month of 2023 :
9th June : Working Group “Pregnancy” 26th June : Eurordis Patient Partnership
28th June : Pfizer Club “Real Life Data” 28th June : Pierre Fabre “Associations’ funding”
10th October : G5 Health 20th October : Webinar “Lobbying”
13th November : ePAG Steering Committee
28th November : Webinar “Connective Tissue Disorders (PXE)”
11th September and 14th December : World Skin Health Coalition
AND ALSO……. IN 2023
16th November 2023 :
Following a first online meeting on 22nd June about Patient engagement, SpotInfoPatients, organised by BMS Laboratory, gathered together several patient representatives for a workshop on the role of decision-makers in the health sector.
9th December 2023 :
For the first time, the Fair Committee organised the Téléthon in Bons en Chablais. Cutis Laxa Internationale was present and offered children a range of activities,e.g. drawing hands to make a fresco i.e. our logo and face painting. € 3,050 were collected for the Téléthon
18th and 19th December 2023 :
Marie-Claude Boiteux presented to children aged 11-12 at the Bons en Chablais secondary school: 200 children attended this awareness raisinf talk about skin disorders. The aim was to reduce the stigma and bullying that children with a skin disorder may face at school.
Each child was given the booklet edited by the French Federation for Skin:
« What about talking…. about skin disorders »
Reaffirming at all levels the commitment to and participation of users
In an article published on 12th December 2023 on the occasion of the National Health Strategy, the High Anthority for Health identified four topics which require much effort and progress :
- Promoting the commitment to and the participation of users with health professionals ;
- Effectiveness of individual rights recognised in the laws of 2002 and those adopted afterwards;
- Representation of users by agreed organisations ;
- Reinforcement of users‘ knowledge.
For us, CLI, these four topics, to which must be added the lack of volunteers and financial means, are the main topics to work on during the coming years if we want to protect the survival of all voluntary organisations.