RARE DISEASES INTERNATIONAL

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

Breaking news! We applaud Malaysia for joining the State of Qatar, the Arab Republic of Egypt and Spain in sponsoring a Resolution on Rare Diseases at the World Health Assembly 2025: Rare Diseases: A Priority for Global Health Equity and Inclusion A Global Action Plan is needed to ensure that every individual with a rare and undiagnosed disease receives comprehensive care and support. The resolution is a step forward towards the achievement of health equity for every person, regardless of the rarity of their condition. To learn more about this initiative join our upcoming public webinar on 30 August. For more details, including the agenda and concept note, visit our event webpage. ➡ https://lnkd.in/eFzRD6iA ➡ To register : https://lnkd.in/dDAfrxdH We call on all Member States to support a #Resolution4Rare, ensuring that #PLWRD are fully included in #UniversalHealthCoverage.

We are pleased to announce the results of the recent RDI Council elections. The newly elected officers are as follows:   ·     Chair: Kirsten Johnson (Fragile X International) ·     Secretary: Ritu Jain (DEBRA International) ·     Treasurer: Yann Le Cam (EURORDIS-Rare Diseases Europe)   Kirsten, Ritu, and Yann will bring strong leadership and dedication to their respective roles, helping to advance RDI’s mission to be a strong common voice on behalf of Persons Living with a Rare Disease (PLWRD) around the world, to advocate for rare diseases as an international public health priority, and to represent RDI members and enhance their capacities at regional and national levels.   We would also like to extend our deepest gratitude to Durhane Wong-Rieger for her nearly 10 years of service to RDI as Council Chair. Under her leadership, RDI has grown significantly, championing the needs and rights of individuals with rare diseases globally. Her unwavering focus and tireless efforts have made a lasting impact on the organization and the community we serve. Please join us in welcoming the new officers and in thanking Durhane for her decade of exemplary commitment and vision. Read the statement here: https://lnkd.in/dFrxhkYb

We need a World Health Assembly Resolution on Rare Diseases asking for a Global Action Plan on Rare Diseases to address the need to facilitate collaboration and knowledge sharing across national boundaries to improve research and development of rare disease treatments. Scientific advances have revolutionized the treatment of many rare conditions, but millions of people living with a rare disease are still being left behind. Join us in calling for a #Resolution4Rare to improve outcomes for PLWRD and make sure that #HealthforAll leaves no one behind.

🔊 RDI is gathering insights from key leaders in the rare disease community to support the WHA Resolution on Rare Diseases. This is a pivotal moment in our collective efforts to ensure that the voices of those living with rare diseases are heard on a 🌍 global scale.  🗓 Today we share the words of Dr. Ayman El-Hattab , Founder and President, of the MENA Organization for Rare Diseases. 🔔Stay tuned as we share compelling quotes from advocates and experts committed to advancing this critical cause. #Resolution4Rare #Health4All