EURORDIS-Rare Diseases Europe

Today, in the lead up to next week’s International Day of Person’s with Disabilities Day, EURORDIS joined the European Commission’s European Day of Persons with Disabilities event to join discussions on ways in which we can advance the rights of people living with disabilities across Europe. #EDPD2024 Key topics for our rare disease community included: ➡️ Making the next phase of the EU Disability Strategy a success. ➡️ Promoting the right to live independently and be included in the community. Adéla Odrihocká, member of our Social Policy Action Group, represented EURORDIS and underscored the critical need for the EU Disability Strategy to support Member States in strengthening their disability assessment and recognition systems: 🗣️ "The majority of people with rare diseases live with a disability or multiple disabilities, which may be visible or invisible. Yet more than half face barriers to obtaining adequate recognition of their disabilities… As a person with a rare disease and a disability myself, my experience is no different. This lack of recognition and lack of adequate support and care are forcing me to navigate these challenges on my own, which has a significant impact on my quality of life and accelerates the deterioration of my health." It is vital that the rare disease community is included in policies that address the barriers they face in daily life and ensure equal rights and opportunities. The next phase of the EU Disability Strategy must help Member States improve disability assessment systems, promote the exchange of related good practices between EU countries, and ensure civil society is meaningfully involved in these reforms! 📺 Missed the event? Catch up the full discussion: https://lnkd.in/ejcdxUks #EUDisabilityRights #UnionOfEquality #RareDiseases #DisabilityRights #Inclusion #StrongerTogether EU Employment & Skills, Claudio PIROLA, Raquel Castro, European Disability Forum

We welcome the new European Commissioners upon their confirmation by the European Parliament and look forward to collaborating with them to address the needs of the 30 million people in Europe living with a rare disease. 🤝 Among the confirmed European Commissioners who will be particularly important to EU citizens impacted by rare diseases are Olivér Várhelyi (Commissioner for Health and Animal Welfare), Ekaterina Zaharieva, (Commissioner for Startups, Research and Innovation), and Hadja Lahbib (Commissioner for Preparedness, Crisis Management, and Equality). Read our full statement including an analysis of each Commissioner’s priorities and a breakdown of how they will impact our rare disease community: https://lnkd.in/ezA5w7EA #Europe #RareDiseases #advocacy #collaboration #health #research #innovation #DisabilityRights #accessibility

What are the Black Pearl Awards? 🌟 #EURORDISAwards2025 The EURORDIS Black Pearl Awards are more than just an event - they are a celebration of resilience, dedication, and excellence in the rare disease community. Named after the rare and precious Tahitian black pearl, these awards symbolise the extraordinary efforts of individuals and organisations who shine brightly in their commitment to improving the lives of people impacted by rare diseases. 🏆 Why the Black Pearl Awards Matter: They recognise and honour the people tirelessly working to make a difference. They shine a light on and raise awareness of the challenges faced by the rare disease community and the collaborative efforts to overcome them. They raise money for innovative initiatives aiming to create a better world for the next generation. They inspire and unite us all, bringing hope to a world where more than 30 million people live with a rare disease in Europe alone. 📣 Whatever your role, this event is your chance to celebrate the incredible work being done in our community. Don’t miss out! 🗓 24 February 2025 📍 Brussels, Belgium & online! 🤫 Secure your early-bird ticket at an exclusive rate: https://lnkd.in/e-PpychQ #BlackPearlAwards #RareDiseases #EURORDIS #Advocacy #ShineBright #CelebrateResilience

Did you know that data from everyday medical records, patient registries, and insurance claims can revolutionise how we understand treatments? 💡 Real-world data (RWD) refers to information gathered from everyday sources, other than from clinical trials. This type of data helps researchers understand how treatments work in the real world, outside the controlled environment of a clinical trial. The European Medicines Agency's latest paper highlights how RWD can: ✅ Inform regulatory decisions & improve patient care ✅ Fill research gaps (like studying treatments during pregnancy) ✅ Help repurpose medicines, saving time & money But challenges like data access and consent remain. By fostering transparency and collaboration, we can unlock RWD’s full potential to advance medicine and benefit patients worldwide.💊 Read the full article: https://lnkd.in/eCMaTgWW #RareDiseases #Europe #EMA #Treatments #DataDriven #PatientCare

“PFO has been the hardest challenge of my life, but also the most beautiful.”🌟 Our special weekly bonus series, Rare on Air Stories, is back! Tune in every week in the lead up to Rare Disease Day 2025 to hear stories from individuals living with rare diseases from all over the world. In this first episode, Dani shares the powerful story of her journey living with progressive fibrodysplasia ossificans (PFO), an ultra-rare condition where muscles, tendons, and ligaments gradually turn into bone. From misdiagnosis to finding her purpose, Danny talks about resilience, raising awareness, and her dream of leaving a legacy for future generations. 🎧 Listen now: https://lnkd.in/euT9HiQz #RareDiseaseDay #RareDiseases #FOP #PFO #PatientStories #Inspiration #Resilience

We are thrilled to announce that registrations are now open for the 14th annual Black Pearl Awards! 🎉 This prestigious event is held each year to honour the outstanding contributions of individuals, organisations, and their inspiring work that creates positive change in the lives of those impacted by rare diseases. 🗓 24 February 2025 📍 Brussels, Belgium & Online! The awards shine a spotlight on the power of collaboration, compassion, and innovation in the rare disease community. #EURORDISAwards2025 ⬇️ Secure your place now by registering on our website https://lnkd.in/e-PpychQ #EURORDIS #BlackPearlAwards #RareDiseases #Advocacy #RareDiseaseCommunity

Wrapping up with the third and final day of Rare Disease Week 2024! Today, our advocates had another packed agenda, delving even deeper into EU policymaking and advocating for rare disease priorities! 🤝 Meetings with the EESC Our advocates connected with key figures from the European Economic and Social Committee, including Beatriz Porres (head of Unit) and Agnes Cser (Rapporteur), discussing the EESC’s role in rare disease policy and how it collaborates with the European Parliament and European Commission to drive meaningful change. 🗣️ Further Meetings with MEPs In continued efforts to build momentum for rare disease advocacy, participants met with additional Members of the European Parliament. 📢 MEP Networking lunch MEPs Stine Bosse and Vlad Voiculescu also gave presentations on the health issues they are prioritising in the new term and how rare disease concerns align with these broader goals over a lunch with participants. These insights offered advocates a clear view of the challenges and opportunities that lay ahead in EU health policy. 🎭 Role-Playing Game at the European Parliament To close the day, advocates took part in an interactive role-playing game, simulating the decision-making process at the EP level. Through this hands-on exercise, participants gained a first-hand understanding of how EU legislation is crafted—a crucial step in preparing them to navigate and influence EU policy effectively. As #RDW2024 draws to a close, we’re proud to see our advocates more equipped, confident, and inspired than ever to bring about change for rare disease patients across Europe! Thank you to each and every one of them for joining us, and to the policymakers and other trainers who made this programme possible! #RareDiseases #Europe #Advocacy #Parliament #training #community

And the day has arrived! It is now officially 100 days until #RareDiseaseDay! We are so excited to see how you will be making Rare Disease Day 2025 a special and memorable one. A heartfelt thank you to our 70+ national alliances who lead the campaign in their countries, inspiring and empowering local communities to take part. Let us know your plans in the comments and be sure to send your events in through our website to be shared with others. Let’s work together to generate real and lasting change in the world.

Day 2 of #RDW24 and the real work has begun! 💪 Today our Rare Disease Week participants were getting stuck in to all things European Parliament related! The day began with a tour of the Parliament itself followed by an afternoon of MEP meetings and a parallel session on the history of the EU to contextualise the day’s learnings. Participants met with some 25+ MEPs on key topics including social policy, regulatory issues and access to treatments. These meetings enabled advocates to share their stories and propose actionable solutions for the rare disease community—fostering direct connections that will resonate long after RDW! We would like to thank every policymaker for their time and dedication in supporting people living with rare diseases across Europe. 🤝 Learn more about Rare Disease Week: https://lnkd.in/e6hpB33P #RareDiseases #Europe #Advocacy #Parliament #training #community

Tomorrow is World Children’s Day. 🌍 For approximately 70% of rare diseases, the onset occurs during childhood. Yet, far too many children across Europe face delays in diagnosis, lack of access to specialists, and inconsistent care. No child should be left behind due to where they live, especially when it comes to health. That’s why we are calling for a comprehensive European Action Plan on Rare Diseases, to ensure every child has equal access to essential medical resources, innovative treatments, and a supportive healthcare community! Read more about our call for a European Action Plan: https://lnkd.in/eyzWVdic #RareDiseases #Europe #global #AwarenessRaising #advocacy #paediatrics