Patient advocacy organizations Association La Maison 8p and 8p Heros CZ, alongside patient advocates Julienne Donnelley and Rebecca Pender, form the 8p European Alliance for advocacy and scientific research concerning invdupdel8p patients.
This is the first public meeting presenting the 8p European Alliance, serving to explain what sparked this collaboration, where we are in terms of projects, what we aim to do looking forward and why we need your involvement as a patient advocate, if not, as a patient advocacy organization.
Association La Maison 8p, non-profit English & French organization, based in France, to support families touched by the rare genetic disorder invdupdel8p.
8p Heros CZ is a non-profit organization based in Czech Republic, to support families touched by the rare genetic disorder invdupdel8p.
#invdupdel8p #8pFrance #8pEurope #8pCzechRepublic #8pEuropeanAlliance
🇱🇷 English ✅ 🇫🇷 Français ✅
ℹ️ For more information about us (pour plus d'information sur nous) :
👉 lamaison8p.com
📲 / lamaison8p
📧lamaison8p@gmail.com
📫 SUBSCRIBE (Abonne-toi) / @lamaison8p
Thank you for watching, feel free to share, like, comment and subscribe! Contact us if you wish to get involved!
#invudpdel8p #lamaison8p #raregeneticdisorder #maladiegénétiquerare #chromosome8 #8pFrance #8pEurope #RareDiseaseDay #JournéeInternationaledesMaladiesRares #EURORDIS
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