EwenLife Maladies Rares
Created in 2017
To investigate (B)
Some signals may appear as inconsistent with a regular activitySocial networks
252 784Activities
Entity types
Location
20 Allées d'Orléans, 33000 Bordeaux, France
Bordeaux
France
Employees
Scale: 2-10
Estimated: 1
SIREN
828209270Engaged corporates
8
2 5Added in Motherbase
6 years, 6 months ago
healthtech Value proposition
[Automatic translation follows] Together break the isolation of rare disease
Ewenlife’s aim is to break the isolation of patients with rare disease or disability or autoimmune pathology and their families, thanks to video testimonies.
Main activities carried out:
Distribute testimonies of peer helps (collected, adapted in French or products by us when there is no testimony on the disease) by social networks or via our streaming platform (https://app.ewenlife.org)
Websaries on subjects common to Diagnostic or Therapeutic Diseases
Digital cafes
Live Facebook on substantive subjects (mistreatment for example)
The purpose of these videos is to transmit the experience of the experience of the rare disease and the associated handicap (s) (pair - aidance): experience, best practices to live with the disease, help to overcome the handicap (s), get out of its isolation.
These activities constitute an essential step in the construction of links within the community by creating relays to resources/aid: to patients/peer family, patient associations, rare disease sectors
https://www.youtube.com/c/ewenliferaredisease/
Rare Disease, rare diseases, pairaidance, handicap, video, testimonies, and platform of StréamngOriginal language
Ensemble brisons l'isolement de la maladie rare
Le but d'EwenLife est de briser l’isolement des patients atteints de maladie ou handicap rare ou pathologie auto-immune et de leur famille, grâce aux témoignages vidéos.
Activités principales réalisées :
Diffuser des témoignages de pair aidance (collectés, adaptés en Français ou produits par nos soins quand ils n’y a pas de témoignage sur la maladie) par les réseaux sociaux ou via notre plateforme de streaming (https://app.ewenlife.org)
Des webséries sur des sujets communs aux maladies en errance diagnostics ou thérapeutiques
Des cafés numériques
Des facebook live sur des sujets de fond (maltraitance par ex.)
Le but de ces vidéos est de transmettre l'expérience du vécu de la maladie rare et du(es) handicap (s) associé (s) (pair –aidance): vécu, meilleures pratiques pour vivre avec la maladie, aider à dépasser le(s) handicap(s), sortir de son isolement.
Ces activités constituent une étape essentielle dans la construction des liens au sein de la communauté par la création de relais vers des ressources/des aides : vers des patients/famille pair , des associations de patients, les filières maladies rares
https://www.youtube.com/c/ewenliferaredisease/
Rare disease, maladies rares, pairaidance, handicap, video, témoignages, and plateforme de stréamng
Présentation | EwenLife Rare Disesaes
EwenLife Maladies Rares - Présentation - EwenLife, c'est fini! 🍎L'odyssée de l'association EwenLife Maladies Rares va prendre fin le 30 juin 2024. Après 8 ans d'une navigation passionnée, notre as...
https://www.ewenlife.org/page/995308-presentation
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