RARE DISEASES INTERNATIONAL

Wishing you all the best for the holiday season! 🎁

Imagine a world where every Person Living with a Rare Disease has access to equitable care and better outcomes. By making a direct donation to RDI, you can help transform this vision into reality. With your support, we can:  • Expand capacity-building programmes   • Fund life-changing fellowships     • Advocate for lasting global change This holiday season, consider a gift to improve the lives of the 300 million people around the world living with a rare disease. Your support makes our community stronger! Donate here: 🎁 https://lnkd.in/d6h2BzbG

It's hard to sum up an entire year in just one minute, especially when 2024 was filled with so many incredible moments for our community. If there's one thing we can say about the year, it's that it showed us unequivocally that together, we are stronger. We are few. We are many. We are diverse. We are united. We are rare. We are everywhere. Thank you to all our members and partners for working each day to improve the lives of Persons Living with a Rare Disease around the world. We look forward to more progress in 2025 and beyond!

Rare diseases are not really rare -- over 300 million people worldwide are living with a rare condition. Nearly all of us will be touched in some way by a rare disease during our lifetime -- whether it affects ourselves, a family member, a friend, a co-worker or another member of our community. This week, Member States are consulting and negotiating on the #Resolution4Rare, calling for a Global Action Plan on Rare Diseases to ensure rare diseases are recognized and prioritized in health systems worldwide. The rare disease community has worked together to put rare diseases on the global health agenda. Now we have to ensure that Member States take up the challenge of ensuring that Persons Living with a Rare Disease have the resources they need to thrive. Please show your support for #Resolution4Rare by sharing this post!

📢We are pleased to share that RDI Chair Kirsten Johnson will be a featured speaker at the REACT Congress and International Rare Diseases Research Consortium (IRDiRC) Conference. 📅 6 March, 14:30-17:30 CEST, Brussels 📍 Session "Mental health and rare conditions: an integrated approach to care and research" 💡 An integrated, holistic approach to care and research of rare conditions should address the whole person. EURORDIS announced their Mental Health and Wellbeing Initiative at the end of 2022, and early results from this work show the importance of: 🌟 Making psychosocial factors to quality of life a priority. 🌟 Recognizing the intersectional mental health needs of those living with rare conditions. 🧠 Poor mental health can affect access to: 🔹 Diagnosis 🔹 Care 🔹 Treatment 🔹 Clinical trials 🔹 Overall quality of life A systematic review has highlighted the impact of rarity and living with uncertainty, and the importance of psychosocial care that: ✅ Promotes self-esteem and inclusion ✅ Combats stigma and discrimination A relational approach that focuses on the whole family and caregiver network is essential to create the best environment for: ✔️ Efficacy of care ✔️ Quality of life over the life course 💬 Psychologically-informed medical care within multidisciplinary teams, with good communication and shared, person-centred decision making, is key. Celebrating the strengths of those living with rare conditions, while addressing their areas of need, can enable a fulsome quality of life for as long as possible. ➡️ Visit the REACT Congress website page: https://lnkd.in/dzprF6R #RAREvolution #REACTCongress2025 #RareDiseases #OrphanDiseases #IRDiRC #ERDERA

📢 BREAKING NEWS! The State of Palestine and Kuwait have announced that they will co-sponsor the #Resolution4Rare at #WHA2025 alongside Egypt, Qatar, Spain, Malaysia, France, Panama, Chile, and the Philippines. Momentum continues to grow behind this initiative to improve the lives of Persons Living with a Rare Disease through global action. We applaud both the State of Palestine and Kuwait for affirming the need to make rare diseases a global health priority and ensure that no one is left behind. 🔗 Learn more about the Resolution here: https://lnkd.in/dPkjSDJk

📢 The ERDERA Joint Transnational Call Webinar is Tomorrow! 📢 Join ERDERA for an engaging and informative session and gain insights into the application process, understand the eligibility criteria, and learn how to craft a proposal that truly stands out!💡 🗓️ Tomorrow, 17 December 2024 ⏰ 14:00 - 16:00 CET Don’t miss out on this opportunity to be part of cutting-edge research.🧬 🔗 Register now : https://lnkd.in/dBtYy4mb #ERDERA #RareDiseases #ResearchFunding

Now that the 2025 Joint Transnational Call for Proposals is officially out, it’s time for the next step! 🚨 Register for ERDERA upcoming webinar to get all the essential details! They'll guide you through the application process, clarify eligibility criteria, and share valuable tips to help your proposal stand out.💡 🗓️ 17 Dec 2024 | ⏰ 14:00-16:00 CET This is a great opportunity to get first-hand information about the call and ensure your application is top-notch. 🔗 Register now: https://lnkd.in/dBtYy4mb #ERDERA #RareDiseases #ResearchFunding

📅🌎 On #UHCDay we share the impactful message of Kirsten Johnson, Chair of RDI, on the importance of financial protection for people living with a rare disease. We need to make sure that #PLWRD are not left behind by #UHC. #UHCStories CSEM for UHC2030 - The Civil Society Engagement Mechanism for UHC UHC2030 - Taking action for universal health coverage

👨👩👧 Families of children living with rare diseases often face the difficult decision to relocate in search of essential care and support. Meet Izyan, the mother of Eshal—a young girl living with chromosome translocation 17 and 2, who remains undiagnosed. 🌍Due to a lack of affordable healthcare, equipment, and educational support in Malaysia, Izyan’s family moved to the UK. This move, while necessary for Eshal’s care, has placed significant financial strain on the family. True Universal Health Coverage means that families shouldn't have to uproot their lives to access the care and services they need. 🏠Healthcare systems must be designed to deliver care to people living with rare diseases in their own communities, rather than expecting them to navigate fragmented systems in search of support.🏥🤝 We must ensure that People Living with Rare Diseases are included in healthcare and health financing. This is why we advocate for a WHA Resolution on Rare Diseases #Resolution4Rare—to guarantee that #UHC truly leaves no one behind. #UHCDay UHC2030 - Taking action for universal health coverage