RARE DISEASES INTERNATIONAL

RDI is proud to support World Duchenne Awareness Day! Be sure to check out the official #WDAD24 documentary from World Duchenne Organization here: https://lnkd.in/etYkyX3a

RDI Global Programme Director Chiuhui Mary Wang and Global Programme Junior Manager Sara Brambilla presented the WHO Global Network for Rare Diseases at the 13th Conference of Undiagnosed Diseases Network International, held in Seoul, Korea on 5-7 September. The event brings together a diverse group of experts, researchers, clinicians, and patient advocates from around the world to discuss the latest advancements and challenges in diagnosing rare and undiagnosed diseases. Their presentation helped boost interest and raise awareness about the network’s initiatives, highlighting the importance of global collaboration and coordinated efforts to address the needs of #PLWRD. #GNRD #HealthforAll #UDNI2024

RDI is pleased to announce the release of its latest publication on #NewbornScreening (NBS), coordinated by our Global Programme Director, Chiuhui Mary Wang. This paper, published in the Rare Disease and Orphan Drugs Journal, provides a unique exploration of the crucial role patient organizations play in advocating for NBS across different national, regional, and disease-specific contexts. This publication is the result of a fruitful collaboration initiated by the International Rare Diseases Research Consortium (IRDiRC), involving several RDI members, including Rare Diseases South Africa(RDSA), the Asia Pacific Alliance of Rare Disease Organisations, the Colombian Federation of Rare Diseases (FECOER), and EURORDIS-Rare Diseases Europe. 📑Read the full article here : https://lnkd.in/eADQsh3Y #NewbornScreeningAwarenessMonth #publication #IRDiRC

Thank you to everyone who attended the public webinar on the World Health Assembly (WHA) Resolution on Rare Diseases last week! We were delighted to welcome over 300 attendees over the course of the event, including many representatives from Ministries of Health. We would like to thank all of our speakers again for their inspiring and thoughtful remarks, and attendees for their active engagement in the chat and question-and-answer platform.  If you missed it, you can still watch here: ➡ https://lnkd.in/g4MZ8CpS    We look forward to working with Egypt, Spain, Qatar, Malaysia, France, and more Member States to make the #Resolution4Rare a reality in 2025!

RDI CEO Alexandra Heumber Perry and team met with the Ambassador of the Arab Republic of Egypt H.E. Mr. Ahmed Ihab Abdelahad Gamaleldin in Geneva today to discuss the WHA Resolution for Rare Diseases initiated by Egypt and co-sponsored by Qatar, Spain, Malaysia and France. We look forward to working together to make the #Resolution4Rare a reality in 2025 to ensure better outcomes for Persons Living with a Rare Disease around the world! Alanna Miller Alexandra Lianes

Persons living with a rare diseases have complex needs requiring a multidisciplinary approach to care. A World Health Assembly #Resolution4Rare will help strengthen primary health care and referral pathway capacities, mobilize and build on the capacities of healthcare providers across sectors, and develop national, sustainable programs dedicated specifically to rare diseases to enable rapid and equitable access to diagnosis, treatment and social support. Together, we can make sure that #UHC means #HealthforAll and not Health for Some by ensuring that #PLWRD are not left behind. Find out more about the WHA Resolution: 🔎 See our website: https://lnkd.in/dPkjSDJk 🖥 Watch our webinar: https://lnkd.in/dj4Kf4Tj

Breaking news! We applaud France for joining the State of Qatar, the Arab Republic of Egypt, Spain and Malaysia in sponsoring a Resolution on Rare Diseases at the World Health Assembly 2025: Rare Diseases: A Priority for Global Health Equity and Inclusion RDI strongly urges other Member States to cosponsor a #Resolution4Rare as a significant step towards achieving health equity for all, regardless of the rarity of their condition. A comprehensive Global Action Plan is essential to ensure that #PLWRD are not left behind in #UniversalHealthCoverage. To learn more, visit ▶ https://lnkd.in/dPkjSDJk

Less than 2 hours before our webinar “Towards a WHA Resolution on Rare Diseases 2025,” today at 14:00 CEST! ➡️ Register here: https://lnkd.in/dDAfrxdH This webinar co-hosted by the Arab Republic of Egypt, the State of Qatar and Spain, will provide a comprehensive overview of the advocacy for a World Health Assembly Resolution on Rare Diseases in 2025. It is a unique opportunity to learn about the significant potential this resolution holds for improving the lives of persons living with rare diseases (PLWRD). With the participation of High-level representatives from: ➡️ the Ministries of Health of Egypt, Qatar, and Spain ➡️ the World Health Organization, private sector, civil society 👥Over 420 registered participants representing a diverse range of stakeholders For more details, including the agenda and concept note, visit our event webpage: ➡️https://lnkd.in/eFzRD6iA To register: ➡️ https://lnkd.in/dDAfrxdH EURORDIS-Rare Diseases Europe FEDER ONG Malaysian Rare Disorders Society Rare Diseases Lesotho Association (RDLA) Casa Hunter - Associação Brasileira de Doenças Raras Fragile X International

RDI is honored to introduce the esteemed speakers who will be sharing their expertise and insights during our webinar tomorrow 30 August “Towards a WHA Resolution on Rare Diseases 2025” at 14:00 CEST. Register here: ➡️ https://lnkd.in/dDAfrxdH This webinar co-hosted by the Arab Republic of Egypt, the State of Qatar and Spain, will provide a comprehensive overview of the advocacy for a World Health Assembly Resolution on Rare Diseases in 2025. It is a unique opportunity to learn about the significant potential this resolution holds for improving the lives of persons living with rare diseases (PLWRD). With the participation of High-level representatives from: ➡️ the Ministries of Health of Egypt, Qatar, and Spain ➡️ the World Health Organization, private sector, civil society 👥Over 420 registered participants representing a diverse range of stakeholders For more details, including the agenda and concept note, visit our event webpage: ➡️https://lnkd.in/eFzRD6iA To register: ➡️ https://lnkd.in/dDAfrxdH RDI calls on all Member States to endorse a #Resolution4Rare so that #PLWRD are not left behind in Universal Health Coverage (#UHC). EURORDIS-Rare Diseases Europe FEDER ONG Malaysian Rare Disorders Society Rare Diseases Lesotho Association (RDLA) Casa Hunter - Associação Brasileira de Doenças Raras Fragile X International

RDI is pleased to share a message from Spain's Minister of Health, Mónica García Gómez, highlighting Spain's endorsement of the WHA Resolution on Rare Diseases. By working together at the international level, can transform #RareDiseases into a global health priority, ensuring better access to diagnosis, treatment, and support services for those living with a rare disease worldwide. The Minister of Health will be joining us at our upcoming public webinar tomorrow on 30 August, 14:00 CEST. For more details, including the agenda and concept note, visit our event webpage. ➡️https://lnkd.in/eFzRD6iA To register : ➡️ https://lnkd.in/dDAfrxdH We urge all Member States to endorse a #Resolution4Rare, guaranteeing that #PLWRD are fully integrated into #UniversalHealthCoverage