EURORDIS-Rare Diseases Europe

Clinical Practise Guidelines (CPGs) are documents that support decision making in healthcare settings. How can we go about creating high-quality, evidence-based CPGs? 🍳 An essential ingredient is patient involvement. This toolkit is designed to help you plan and deliver a face-to-face workshop for patient representatives and clinicians, so that they can learn in an interactive manner about how CPGs are developed and how the patient voice can be incorporated throughout the development process. The toolkit is comprised of three documents: 🖥️ A summary of the workshop’s stages 🗣️ A Facilitator’s Guide 📄 An Information Sheet for Participants Start using the toolkit and contribute to effective patient-centred care today: 👉 https://lnkd.in/e-eKyuJc #PatientEngagement #PatientPartnership #RareDiseases #toolkit #ERNs #EuropeanReferenceNetworks #guidelines

Introducing… 🥁 #SportingRare In celebration of #Paris2024, we will be taking a deep dive into all things rare diseases and sports related! Exercise and sports can be transformative, often serving as a central aspect of life and building tight-knit communities. We will be talking to some of the Paralympians living with a rare disease who are at the top of their game and will be going for gold this summer, and also taking a closer look into the everyday experiences of our community on the sporting field! Stay tuned for all our upcoming Sporting Rare content and catch up on what you miss by searching the hashtag #SportingRare! Are you living with a rare disease and a member a sporting community? What accessibility measures would make sports more accessible for you? Tell us now in the #RareBarometer survey on the impact of rare diseases on every day life! 👉 https://lnkd.in/g_Di3Dvm #SportingRare #RareDiseases #Europe #disability #accessibility #policy

Over the past decade, rare disease recognition and diagnosis have increased, expanding knowledge within specialised clinical teams and centres, as exemplified by the European Reference Networks (ERNs). The challenge now is to apply this expertise to improve diagnosis, care, and treatment through disease-specific measures. How can we do this? Let’s find out together! Our upcoming Patient Partnership Webinar will explore examples of these measures and the crucial role of patient representatives can play in maximising their impact! 💬 Patient Partnership Webinar – Unlocking ERN Potential: Disease Specific Measures 🗓️ 24 July 2024 ⏰ 3PM – 4:30PM CET ➡️ https://lnkd.in/embvg_79 #PatientEngagement #PatientPartnership #RareDiseases #guidelines #ERNs #EuropeanReferenceNetworks

The Executive Summary of the 12th European Conference on Rare Diseases and Orphan Products is now available! Weren’t able to attend #ECRD2024? Were present but want a reminder of the main highlights? The report covers everything from the pre-conference session summaries to key quotes and policy outcomes. These key policy outcomes also form the basis of our Open Letter, calling on European policymakers to move us towards a more inclusive and effective health union. There are only a few days left to add your voice to the call and sign the letter before we meet with Commissioner Stella Kyriakides on 23 July. 🖋️Read the full report and sign now: https://lnkd.in/eEjwHPHx #ECRD #OrphanDrugs #RareDiseases #Europe #policy #advocacy

Over the years, the EURORDIS Black Pearl Awards have hosted some extraordinary people (even royalty!), but it is far more than “just a fancy dinner”. From fundraising, to education, to acting as a political platform, the evening serves a variety of functions. In our latest article, we look back on the history of this flagship EURORDIS event to see how it began and how far we’ve come! We spoke to some of the earliest awardees and the people who have been responsible for making it happen to get a peek behind the curtain. Do you want to become part of the Black Pearl Awards history? Nominations are now open for the #EURORDISAwards2025! Don’t miss your chance to have your say in who joins our incredible lineup of past awardees! ⭐ #community #awards #RareDiseases #RaisingAwareness #nominate

Are you living with a rare disease and disability? 💬 We want to hear from you! The latest #RareBarometer survey focuses on the impact of rare diseases on daily life, including experiences with disability recognition and support. Share your story to help us drive positive change in the rare disease community. Available in 25 languages until 8 September. ✅ https://lnkd.in/g_Di3Dvm #RareDiseases #Survey #HolisticCare #SocialParticipation #VulnerableGroups #access #disability

As the #OpenAcademy2024 participants join our community of alumni, we are taking a look back at this year’s trainings! Taking place in June, we welcomed 70+ advocates from 23 countries, along with over 25 faculty, to Barcelona for the intensive in-person training of our Medicines Research and Development School and Scientific Innovation & Translational Research School. 🗣️ The best part? “Engaging with the other participants in a very tangible way. Also, to hear and learn about their various ‘roadmaps’ and stories. Very humbled and inspired. And of course, the actual learnings! I really feel I have learnt a lot which I will be able to apply in my patient advocacy work.” - EURORDIS Open Academy Participant 👉 https://lnkd.in/ey_Q7mVY #EURORDISOpenAcademy #RareDiseases #Europe #training #CapacityBuilding #PatientAdvocacy

There is still time left to register for our upcoming webinar on the role of patients in the design of rare disease care pathways. In healthcare systems, a 'care pathway' is a comprehensive care plan that outlines each step for a specific patient population to ensure they achieve the best outcomes and quality of life safely and efficiently. These pathways form the foundation of our healthcare systems by translating clinical guidelines into practical actions! By sharing best practices from real-world case studies, this webinar will discuss the best ways that patients and their representatives can get involved in the design and development of these pathways. Register now! ➡️ https://lnkd.in/eDPMRfkJ #EuropeanReferenceNetworks #ERNs #RareDiseases #healthcare #JointAction

This is the final call for anyone wishing to submit their application to join the EURORDIS Digital and Data Advisory Group (DAG)! The group’s mandate is to provide expert advice to EURORDIS on all aspects of digital health policies and procedures, based on your personal experience as a member of the rare disease community. The group has contributed to several influential EURORDIS positions in past and will continue to play a key role in shaping patient engagement and patient-centric approaches in numerous European projects such as FACILITATE, JARDIN, and Screen4Care! Applicants must: 🧠 Have a strong interest in digital health 🗣️ Have a high level of fluency in English 🤝 Be an active member in the EURORDIS network 🎓 Have attended at a data and digital training organised by a patient organisation (desirable) Answer the call! ➡️ https://lnkd.in/eEasAw_W #volunteers #data #HealthData #DigitalHealth #RareDiseases

Thank you to the European Economic and Social Committee for inviting our Director of Public Affairs, Valentina Bottarelli, to speak to today’s hearing on their upcoming Opinion "Leaving No One Behind: European Commitment to Rare Diseases”. Ágnes Cser, the EESC Rapporteur, opened today’s first panel by reminding the room of the our community’s high level of unmet needs. 🗣️"Early diagnosis is something that is very important. Families are losing their jobs, they have financial problems and preventable diagnosis can already be achieved in a prenatal stage. I ask you to help us with this opinion." - Ágnes Cser The panel rounded out with contributions from Csaba Kontor, from the Hungarian Presidency of the Council of the EU, and Fulvia Raffaelli, Head of Digital Health at DG SANTE promising continued commitment to rare disease policy advancements. Most notably, Enrique Terol, Health Attaché from the Spanish Permanent Representation to the EU, stressed that there’s a long way to go towards an EU Action Plan on Rare Diseases, but we still need a structured roadmap - “a plan to build The Plan.” The second panel opened with our own Valentina Bottarelli reiterating Mr Terol’s sentiments and underlining the urgently needed actions detailed in our #ActRare2024 priorities. The discussion concluded with Victoria Hedley, Rare Disease Policy Manager, highlighting the importance of national-level plans to progress, and Anne-Sophie Lapointe (PhD) presenting some best practices from France. 🗣️ “The rest of the world look at the EU for national plans.” - Victoria Hedley We now eargerly await the EESC Opinion! 🤝