EB Clinet

Why is EB Clinet important for health care professionals working with EB patients? How do we support the medical EB community? We asked some of our contacts to share their thoughts on EB Clinet and are immensly proud on the feedback we could gather. See the video and be inspired to become part of this amazing community! #EBClinet #Epidermolysisbullosa #fightEB #strongertogether

2-0-2-5 It's going to be a great year! 2 Online Seminars delivered by recognised experts 12 Newsletter delivering latest EB-related information directly into your inbox 20+ LinkedIn posts sharing insights from the medical EB community 125+ Contacts offering their help and guidance for medical questions 100.000+ Working minutes from the EB Clinet team to support EB care as best as we can! If there is anything you think we can help you with or you have recommendations for improvement of our network, feel free to share. Either here on this platform or via office@eb-clinet.org.

Our first try to use the many options this platform offers to transport information :) We want to let you know about two publications that shed a light on the impact of and potential treatment options for pain in RDEB. Click on the article below to get the information.

Such an honor to have been invited to discuss the current research field and discuss potentials for advancements in order to bring new treatment to EB patients all around the world as quick and safe as possible.

Extended closing date: 2nd December Take the opportunity to vote on the most pressing research issues to be addressed in the coming years! https://lnkd.in/dptzbHCv

📣 EB professionals! 📣 DEBRA UK is asking for your input - Whether you’re a dermatologist, nurse, mental health specialist, dentist, podiatrist, GP, social worker, or one of the many more professionals who work with families affected by EB – please take a few minutes to vote in this vital new global survey! 🩺 This survey will help decide DEBRA UK's top 10 priority questions for EB research, and it will set EB research strategies for years to come. 🔬 So please vote and share! https://lnkd.in/dx2kT2Ge

📣 Shared presentations online! Some speakers from the EB Clinet Conference 2024 agreed to upload their presentation slides on the EB Clinet website. If you've missed the event or want to revisite some information, find the presentations here: https://lnkd.in/dc-86-8y We hope to add some more in the coming days.

We are proud to say that the EB Clinet Conference 2024 was a great success and a blast! Every single delegate made this an amazing event and we were honoured to host 280 participants from 33 countries (from Chile to Japan, from Norway to Australia). The presentations, forums, discussions and coffee chats ensured the sharing of current best practice care examples and also new ideas to improve support for EB patients. We thank all the speakers, chairs and session leaders for their support and willingness to share their expertise. Watch out for more photos to come at the EB Clinet Website (https://lnkd.in/d_YUaSck) and we hope to see you all soon! #Epidermolysisbullosa #EBClinet #DEBRA

Although the summer temperatures are tempting us to head to the lake in the afternoons, the EB Clinet team is tirelessly working on the EB Clinet Conference (17.-18. October 2024, Vienna), spurred on by the generous support from Chiesi USA, Inc. who secured Plantinum Sponsor entiltlements. Want to join us and get an update on the latest clinical developments and care options for Epidermolysis bullosa patients? Then register now: https://lnkd.in/dSmD-aQa

📢 NEW SESSION - We are excited to announce yet another forum alongside the top-class main stage programme at the EB Clinet Conference (17th-18th October, Vienna, Austria). On Friday afternoon, a session titled “Philanthropic Drug Development in EB – learning from the past for the future” will shine a light on success stories, current processes and improvement potential in the drug development landscape for EB. A series of short talks will give insight into different perspectives (patient and non-profit organizations, academia, industry). The following time for discussion should enable a lively exchange on future perspectives. Want to join the discussion? Then register now: https://lnkd.in/dSmD-aQa