🔥The 9th Round of Easy Loan, Earn $40 Reward is in progress❗️ ⏰ Promotion Period: January 15th - Feburary 15th, 2025 👉 Register now and check more details at gate.io/campaigns/358

We are delighted that we keep receiving lovely feedback about the short #EpiCARE film screened at #ERNEU. It's a real life story of a boy who received help through our surgical #epilepsy case discussions. Can't wait for the official release date !

#zoeballbreakfastshow the best running Songs ... anything of Keep Calm & Carry On (Stereophonics) or Barking (Underworld) or TingTings 😃🏃‍♂️ been running to these for over 15years! Love them.

Helena Dalli‘s commitment to „achieve equality in all its senses“ ❤️❤️❤️

ECRD 2020... fabulous event!!!

#ECRD2020 is over matt johnson 💙 Big Thx Birute Tumiene Alberto M Pereira, Katie Bushby, Dr.Hommes, Dr.McKay, Prof Buchan, June Rogers, Dr.Lagercrantz, Vicky Hedley, Dalia Aminoff, Dr.Hebestreit, Dr.Dougzou, Melina Brovall, Anke Widenmann-Grolig, Prof. Voigtländer, Enrique Terol

Excellent Key note lecture from Daan Hommes on Digital pathways and AI at #ECRD2020, what a conference! Thank you all RD Family !@RareEndoERN matt johnson Ines Hernando Yann Le Cam LUMC Leiden @BotcentrumLUMC UCLA

🟢Live now: Our Policy event with EURORDIS-Rare Diseases Europe ⤵️ "How to address the #MentalHealth needs of people in vulnerable situations? A call for the EU Comprehensive Approach to Mental Health to leave no one behind" Co-hosted by MEPs Sara Cerdas @saracerdas.bsky.social & Tilly Metz. 🧵

The Commission's Comprehensive Approach to #MentalHealth & the European Parliament’s report on Mental Health are 2️⃣ important steps in mainstreaming #MentalHealthinAllPolicies, adopting a psychosocial model. #MHPSS

People with #rarediseases face triple the risk of experiencing #mentalhealth challenges. EURORDIS-Rare Diseases Europe CEO urges the European Commission & Member States to ensure vital support for all, as well as those with rare diseases, and to prevent stigma, discrimination, and exclusion.

President of NF Kinder (member of EURORDIS-Rare Diseases Europe) shares an insightful testimonial shedding light on the #mentalhealth challenges stemming from life with a rare disease. Read more in this blog: bit.ly/3uwOO5X 📜 #RareDiseases

Today at the #MentalHealth policy event by MHESME & EURORDIS-Rare Diseases Europe, EATG's policy manager Ann Isabelle von Lingen stressed the importance of #StigmaFree mental health support to be integrated into #HIV prevention and care.

Today WHO/Europe and The Ministry of Social Affairs of Estonia co-hosted a high-level conference marking 15 years of the Tallinn Charter, addressing current health systems challenges to rebuild trust and make them more responsive. matt johnson spoke about the role of precision medicine in tackling this:

matt johnson “The new #WHONMP creates a unique multi-stakeholder forum to facilitate discussion, learning and build #trust to address issues around accessing genomic innovations” #TallinnCharter2023

Excellent panel for #PrecisionMedicine at #TallinnCharter2023 - take home messages: more #collaboration #investing in #patientcenteredcare, development of #data infrastructure, better #communication. Investing now may lead to savings later but we need to have a realistic approach

"Psychosocial needs must be addressed as a standard part of medical care, ensuring that all people have access to screening and support at point of diagnosis." - Matt Bolt-Johnson, EURORDIS Mental Health & Wellbeing Lead 👉 Register now: go.eurordis.org/hzTBvK

Looking forward to celebrating Rare Disease Day 2024 with GH4GH

Join us in making rare diseases a priority! 🌍 With the EU elections looming, we need your voice for #ActRare2024 to build a Europe where everyone with a rare disease receives timely care and equality. 📚 Read our demands: eurordis.org/actrare2024/ and tag candidates!

On #RareDiseaseDay, EBC is happy to bring together researchers, clinicians, people living with a rare brain disease and industry to raise awareness on rare brain diseases and their societal impact. Follow us for live tweeting!

On #RareDiseaseDay, EBC is happy to bring together researchers, clinicians, people living with a rare brain disease and industry to raise awareness on rare brain diseases and their societal impact. Follow us for live tweeting!

BRAINTEASER S. Kympouropoulos Magda EFPIA Frédéric Destrebecq We turn the focus to patients and caregiver priorities, with a personal testimony from Tim Buckinx (wrepihunter) and interventions from Matt Bolz-Johnson (EURORDIS-Rare Diseases Europe) on #MentalHealth and rare conditions and Orla Galvin (@EUneurology) on rare #neurology.