ERN CRANIO ’s Post

🚨 Call for Nominations: ERDERA Multistakeholder Advisory Group 🚨 The European Rare Diseases Research Alliance (@ERDERA) is seeking experts to join its Multistakeholder Advisory Board (MAB)! This is your chance to help shape the future of rare disease research across Europe. We are looking for professionals in the following fields: 1. Rare Disease Researchers 2. Healthcare Professionals 3. Public-Private Partnership and Industry Professionals 4. Digital Health and Data Scientists 5. Regulatory, HTA and Policy Groups 6. Funding and Grant Management Bodies 7. Education and Training Personnel 8. Strategic Coordinators 9. Ethics and Patient Consent Groups 10. Legal Experts in Healthcare and Researchers Your expertise will guide ERDERA in its mission to advance prevention, diagnosis, and treatment for over 30 million people in Europe living with rare diseases. 🔗 Click here to find more information: [https://loom.ly/-fvnkKs] 🔗 Submit your application by October 31, 2024! #ERDERA #RareDiseases #HorizonEurope #AdvisoryBoard #ResearchInnovation #PatientAdvocacy

ERN CRANIO nurse competency profile consensus meeting! Nurses and nurse specialists came together for a special event in Rotterdam on 12 & 13 September! During these days, they worked on a consensus statement to create a competency profile on nurses and nurse specialists specialized in craniofacial and cleft care. This groundbreaking research will help better understand what important competencies are in craniofacial and cleft care and will reveal common competencies across European countries. Thank you all for coming to Rotterdam. Stay tuned for the publication!

ERDERA opens a new era for rare disease research in Europe and beyond! 🚀   👩🏽🔬Backed by the European Union, over 170 organizations are uniting to make Europe a leader in rare disease research and innovation. At ERN CRANIO, we're proud to partner with the European Rare Disease Research Alliance (ERDERA)! 🌍💙   Read ERDERA’s press release to learn more 🗞️https://bit.ly/3zgaZA0   Visit our website🌐 erdera.org #ERDERA #RareDiseases #ResearchInnovation #HealthInnovation 

ERN CRANIO is hosting a webinar: Sleep Disordered Breathing in Children with Craniofacial Anomalies. Make sure to attend it on September 13 from 3-5 pm CET.

ERN CRANIO Webinar: Sleep Disordered Breathing in Children with Craniofacial Anomalies

🚀 Reminder: We are still gathering responses for our survey on the impact of Rare Diseases research resources and tools provided by the European Joint Programme on Rare Diseases (EJP RD). 🧬🔬 As a valued member of the Rare Diseases research community, your feedback is crucial. This survey will help us understand and address the gaps in rare diseases research, guiding our future efforts in data processing and service provision. Why Should You Participate? Share your insights and challenges in the field of rare diseases research. Influence the direction of EJP RD’s resources and tools. Contribute to the upcoming European Rare Diseases Research Alliance partnership. Take the Survey Now! 👉 https://lnkd.in/epr8W4pW

First patient-clinician engagement group in-person meeting in Paris! This weekend healthcare professionals and patient representatives from all over Europe came together in Paris at HÔPITAL NECKER for the first time in person! We had an amazing meeting with lively discussions on the following topics: - Patient representation in Europe. How to involve more patient organizations in ERN CRANIO, what their barriers and facilitators are and what the current state of patient representation is in Europe with regard to craniofacial and ENT conditions. - Professionalisation of patient organizations. Creating a checklist on what you need to start or professionalise patient organizations - Accessibility of information for parents and patients. Creating information documents, improving patient- and parent-friendly information on the ERN CRANIO website (see link in our bio!) and how to communicate a diagnosis - Access to cross-boarder healthcare It was a true patient-partnership meeting, with collaboration, partnership and equality between healthcare professionals and patient representatives. Looking forward to taking the next steps in ERN CRANIO on these topics! Thank you all for your participation: Gareth Davies giovanna Paternoster Wanda Lattanzi Marizela Kljajic Philippe Pakter Virginie Kauffman MONTSERRAT MUNILL FERRER Frederic Acke Ivana Marinac Jana Steerneman Ines Ben aissa And welcome guests Mariët Faasse Kristin Billaud Feragen #patientpartnership #rarediseases #ERNCRANIO #patientrepresentation #healthcareprofessionals

Last week we represented ERN CRANIO at the European Cleft Palate Craniofacial Assiciation Conference ECPCA Milan 2024 in Milan! This conference brought together experts from all over the world to share recent advantages in Cleft and Craniofacial care and research. It was great meeting members from our network and people from all over the world. Thank you all for the great exchanges of thoughts and the many new ideas and project to move forward with our European experts! Marizela Kljajic Gareth Davies Victor van Roey Saranda Ombashi Aebele Mink van der Molen Krzysztof DOWGIERD