RARE DISEASES INTERNATIONAL

🚨 Just 1 week to go! Join our public webinar on the WHO Essential Medicines List (EML)! https://lnkd.in/d6XBsDeq 💊 What is the EML? EML is a critical instrument for advancing Universal Health Coverage (UHC) by ensuring identification of essential medicines. However, its role in rare disease access remains underrecognized. This webinar will explore how the EML can serve as a powerful tool to improve access to treatments for persons living with a rare disease (PLWRD) at both global and national levels. 💡 Why attend? • Understand the WHO EML and its significance for rare diseases. • Discover key findings from RDI’s Essential Medicines Working Group. • Learn about our Call-to-Action to leverage EML for RD medicines. 🗣️ Hear from leading experts: • Dr Chiuhui Mary Wang – Global Programme, Rare Diseases International • Chiara Tovani – Global Programme, Rare Diseases International • Roberta Anido de Pena Anido – Secretaria de Comisión Directiva, Federación Argentina de Enfermedades Poco Frecuentes - FADEPOF • Roberta Luzzi – Senior Director, Global Medical Affairs HIDO, Chiesi Group • Salome Mekhuzla – Director, Global Development, World Federation of Hemophilia / Fédération mondiale de l'hémophilie (WFH) • Prof. Sangeeta Sharma – Professor, Neuropsychopharmacology, IHBAS & President (Hon), DSPRUD • Prof. GILLES VASSAL – Professor, Gustave Roussy Cancer Center, SIOP & SIOP Europe 🔗 Register now! https://lnkd.in/d6XBsDeq  #RareDiseases #UHC #WHO #EssentialMedicines #PublicWebinar

📢 Call to Action – Support the Rare Disease Community! 🌍 Over 300 million people live with a rare disease, yet they’re often overlooked in health policies. It's time to change that! Following the WHO Executive Board decision to recommend to the WHA the adoption of the resolution "Rare diseases: a global health priority for equity and inclusion" calling on WHO to develop a Global Action Plan on Rare Diseases (GAPRD), WHA 78 has the opportunity to make a real difference for PLWRD and PLWUD. 🌐 The Coalition for the Resolution on Rare Diseases urges Member States to adopt the Resolution and commit resources for its implementation, ensuring that people with rare and undiagnosed diseases are included in Universal Health Coverage (UHC). How you can help: ✍️ Join the Coalition and sign the call to action 📲 Share this post 📢 Raise your voice! 🔗 Learn more & take action: https://lnkd.in/dgY4usEM Together, we can create a world where no one is left behind 🌍 #RareDiseases #WHACoalition #Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC

📢 Call to Action – Support the Rare Disease Community! 🌍 Over 300 million people live with a rare disease, yet they’re often overlooked in health policies. It's time to change that! Following the WHO Executive Board decision to recommend to the WHA the adoption of the resolution "Rare diseases: a global health priority for equity and inclusion" calling on WHO to develop a Global Action Plan on Rare Diseases (GAPRD), WHA 78 has the opportunity to make a real difference for PLWRD and PLWUD. 🌐 The Coalition for the Resolution on Rare Diseases urges Member States to adopt the Resolution and commit resources for its implementation, ensuring that people with rare and undiagnosed diseases are included in Universal Health Coverage (UHC). How you can help: ✍️ Join the Coalition and sign the call to action 📲 Share this post 📢 Raise your voice! 🔗 Learn more & take action: https://lnkd.in/dgY4usEM Together, we can create a world where no one is left behind 🌍 #RareDiseases #WHACoalition #Resolution4Rare #GlobalHealth #LeaveNoOneBehind #UHC

Our March newsletter is here! Check your inbox or subscribe for updates here on Linkedin.

RDI is thrilled to welcome Lundbeck to our Alliance of Companies. Lundbeck is a global pharmaceutical company specialized in brain diseases  and has been at the forefront of neuroscience research for over 70 years. Read more about Lundbeck here: https://lnkd.in/eB9qrqc Lundbeck's Senior Vice President for Corporate Communications and Global Public Affairs, Tine Østergaard Hansen, comments: “RDI has been relentlessly advocating for rare diseases and supporting persons living with a rare disease and their families. Lundbeck is proud to become a member of RDI’s Alliance of Companies and support its ongoing work to prioritize rare disease globally and support its community.” RDI's Alliance of Companies is a platform for companies to support the rare disease cause internationally and develop a greater understanding of issues of importance to Persons Living with a Rare Disease around the world. Find out more: https://lnkd.in/drdxcSz6

Today, RDI Strategic Engagement Manager Debra Bellon and Global Policy Coordinator Alanna Miller participated in a panel discussion led by Labrini Papageorgiou, Health Policy Director of RARE DISEASES GREECE and including the participation of Myriam RAI of the Friedreich's Ataxia Research Alliance (FARA) and Fernando Arnaiz of Roche, as part of the 5th International Conference of Rare Diseases. Debra and Alanna discussed the grassroots effort to make the WHA Resolution on Rare Diseases a reality and how we hope it will bring about real and sustainable improvements in the lives of #PLWRD around the world. The panel illustrated the multistakeholder readiness to make the #Resolution4Rare a reality and to implement the Global Action Plan on Rare Diseases around the world in order to ensure that it drives meaningful outcomes for our community. Learn more about the Resolution on our website: https://lnkd.in/dPkjSDJk

Did you miss our Rare Disease Day webinar? You can watch the video here: https://lnkd.in/dgCS9Mtz Our key takeaways: 🔑 Political support and awareness have grown thanks to grassroots efforts 🔑 The rare disease community is truly multistakeholder and brings together researchers, clinicians, advocates, industry members, and decision makers to build momentum. The #Resolution4Rare presents a real opportunity that will permit all stakeholders to fulfill their responsibility in improving the lives of PLWRD 🔑Our community is ready for action! We are prepared to contribute to the implentation of the Resolution to ensure that it's more than just a piece of paper - with the global community's help, it will lead to real actionable, meaningful change across the world

RDI's Global Policy Coordinator Alanna Miller and Strategic Engagement Manager Debra Bellon will participate in a panel "WHA Resolution on Rare Diseases: From Vision to Action" at the Ministry of Health and Population, Egypt at this year's 5th International Conference on Rare Diseases, organized by RDI Member RARE DISEASES GREECE (RDG). Other panelists include Labrini Papageorgiou, Health Policy Director, Rare Diseases Greece, Myriam RAI, Director of Global Relations & Initiatives at Freidrich's Ataxia Research Alliance and Fernando Arnaiz, Access Lead, LMICs, Roche. ▶️ Friday, 28th March 2025 10:30-11:30 CET: Online View the full conference programme and register here: https://loom.ly/e6RKYVE

Improving Care for Rare and Undiagnosed Diseases – The Role of Care Pathways 🌍 Patient care pathways are key to managing rare diseases. These multidisciplinary frameworks ensure that every step—from diagnosis to treatment and care—follows a coordinated and structured approach. They integrate medical and non-medical disciplines to streamline care, reduce diagnostic delays, and improve health outcomes 🏥 In the context of rare diseases, where conditions are often complex and multisystemic, care pathways help bring together experts from various fields, ensuring people living with rare diseases receive the right care at the right time. These pathways also include mental health support, counseling, and patient education to help families navigate the complexities of the healthcare system 💡 🗺️ Examples like RarERN Path (Europe), Rare Care Centre (Australia), and Casa dos Raros (Brazil) show the effectiveness of implementing such pathways, tailored to each local context, improving clinical outcomes and reducing costs 🌍 📲 If you're interested in reading more, check out the full article here: https://lnkd.in/dBErN36V 📚 Article developed by Sara Brambilla, Gareth Baynam, Roberto Giugliani, Holm Graessner, Carmencita Padilla and Chiuhui Mary Wang. This work has been supported by Rare Diseases International. #RareDiseases #PatientCare #HealthcareInnovation #MultidisciplinaryCare #HealthCare #PatientExperience

Just one month left before the opening session of the MENA Congress for Rare Diseases in Abu Dabi, featuring RDI CEO Alexandra Heumber Perry speaking about the WHA Resolution on Rare Diseases and the MENA region's role in shaping the impact of the #Resolution4Rare. MENA Organization for Rare Diseases Register here: https://lnkd.in/gveJTYqe