Rare Diseases Hungary

🗞️ A new edition of OrphaNews is out now for all your #raredisease news needs! In this issue: the EESC calls for a European action plan, results of the first evaluation of the #ERNs, and more. Read now ➡️ https://lnkd.in/dDpEemR4

The conference For a European commitment to tackling rare diseases was organized by the EESC under the EU Hungarian presidency in Budapest, gathering experts from different sectors engaged in the shaping the future for persons living with the rare diseases #PLWRD. I am proud to have shared the panel about delivering better data on #rarediseases through the #EHDS. I could emphasize the importance of accurately identifying rare disease data through #ORPHAcodes implementation in health information systems. This will ensure transnational interoperability and inclusion of all rare diseases including those yet undiagnosed. Bas Nijhuis Hélène Dollfus Janos Sándor Tamas A. Kovács Stefan Živković Lech Pilawski Orphanet European Economic and Social Committee

‼️ Nagy sikerrel lezajlott az EU elnökségünk és az EGSZB ritka betegségekkel foglalkozó magas szintű konferenciája! Nagyon köszönjük minden együttműködő partner hozzájárulását, hogy az EGSZB feltáró véleménye és ez a konferencia létre jöhetett ❗ 🧡 Az esemény összefoglalója itt olvasható: https://lnkd.in/dacm8DXg

It is great to see this long-awaited report published on our beloved ERNs! Congratulations to all the coordinators, experts and patient community leaders who have invested their hearts and souls into this wonderful (and groundbreaking) ERN-wide infrastructure and networks 👏 The ERNs really are the foundation of the European rare disease eco-system...! Lets now make the sustainable and renew our call for continued commitment and funding in the MFF negotiations 💶 , support by MS to the HCP members 🧬 as well as cranking up the support and partnership between the ERNs, academic and industry partners! #Together4RD

❗ Az EU elnökségünk alkalmával az Európai Gazdasági és Szociális Bizottsággal (EGSZB) közösen pénteken 11.29-én 09:00-16:00 között rendezett nagy ritka betegségek konferencia követhető online magyarul az alábbi linken: Regisztrálni ehhez nem kell, és a bal oldali menüben látszik a program, az előadók, stb. mellett a Webstream/Élő internetes közvetítés gomb is. Odamenve választható a magyar szinkron tolmácsolás ❗ https://lnkd.in/dTFCEyRR Nagy öröm, hogy hosszas küzdelem után mindez megvalósul! 😊

The first JARDIN newsletter is out! Did you miss it? Find out the latest news from JARDIN Joint Action, the European Reference Networks, the Member States participating in the Joint Action and other entities such as ERDERA, EURORDIS-Rare Diseases Europe Orphanet, ERICA, and many more! Find out what's on the go and subscribe to get the latest news and events: https://lnkd.in/dswWsbNG #EU4Health #RareDiseases #ERNs #news

I had the honour of participating in the 2024 Rare Disease Week on behalf of HUFERDIS/RIROSZ. The aim was to participate in the development of EU health policy for the rare disease community. 💥hashtag#RDW2024 We learned about the steps of European decision-making, the roles of the newly elected Parliament and the new European Commissioners. Our team met with over 25 MEPs on key topics such as social policy, regulatory issues and access to treatments. We were able to propose feasible solutions for the rare disease community. We met with key figures from the European Economic and Social Committee, including Beatriz Porress (Head of Unit) and Ágnes Cser (Rapporteur), to discuss the role of the EESC in rare disease policy and how it works with the European Parliament and the European Commission to drive meaningful change. During an MEP Networking Lunch, MEPs Stine Bosse and Vlad Voiculescu shared with us a presentation on the health issues that are the focus of the new term and how the issues of rare diseases fit into these broader goals. The insights offered provide a clear picture of the challenges and opportunities facing EU health policy. 🎭 Finally, we were able to participate in an interactive role-play lasting several hours, simulating the decision-making process at EP level. Many thanks to the organizers, as well as the policymakers and other educators who made this program possible! hashtag#Rare Diseases hashtag#Europe hashtag#Advocacy hashtag#Parliament hashtag#training hashtag#community

✒️The Lancet Group has just published an editorial calling for the adoption of a resolution on rare diseases at the upcoming 2025 World Health Assembly. This initiative promoted by RARE DISEASES INTERNATIONAL strongly resonates with #ERDERA's mission to systematically and sustainably improve the rare disease ecosystem. 🤝The editorial asserts that “collective action and a collaborative, multisectoral approach are vital to making rare diseases a global health priority. To ensure that Universal Health Coverage (UHC) indeed entails “health for all”, rare diseases need to be made a global health priority". We wholeheartedly support this claim and are committed to advancing collaborative research. 📖 Read the full publication here: https://loom.ly/2OGfs9A #HealthEquity #RareDisease #UniversalHealthCoverage #HealthForAll Daria Julkowska, Yanis Mimouni, 🇪🇺 Clément Moreau, INSERM, EURORDIS-Rare Diseases Europe, David Morrow PhD MBA

🚀Official Launch of ERDERA - Advancing Rare Disease Research! This week has been momentous for our alliance, marked by a public opening ceremony in Paris and online that drew the participation of around 600 people. 🌍 Leaders of ERDERA also engaged in productive sessions to kick off our work, align on next steps, and further explore internal synergies. With nearly 2000 dedicated professionals organised into six workstreams—Funding, Clinical Research Network, Data Services Hub, Expertise Services Hub, Education & Training, and Acceleration Hub—ERDERA is poised to make significant strides in rare disease research and collaboration. 🧑🔬👩🔬 We are excited about the future and the impact our collective efforts will have on the rare disease community. Stay tuned for more updates as we embark on this important journey! ➡️https://loom.ly/HBCgxQo #ERDERA #RareDiseaseResearch #EUfunded #HealthcareInnovation #Collaboration Hélène Le Borgne European Health and Digital Executive Agency (HaDEA) Dusan Sandor Esteban Pérez Resina Giovanni Migliaccio Claudia Pansieri Robin Sarfati Yann Mahé Max Dumoulin

It is time to officially open ERDERA! For this special moment we'll be honored to welcome exceptional speakers and give you insights in what ERDERA will offer to the rare diseases community. Do not hesitate to register and join us to celebrate together!