RARE DISEASES INTERNATIONAL

📣 Save the Date! Join us on 28 August from 14:00 to 15:30 CEST for the next WHA Coalition Webinar on Next Steps. This session will feature speakers from the Ministry of Health and civil society organizations who will share key updates, discuss the formalization of the Coalition, and explore next steps to implement the WHA Resolution on Rare Diseases, including the development of the Global Action Plan.   The speakers will be:   Kirsten Johnson, RARE DISEASES INTERNATIONAL Alexandra Heumber Perry, RARE DISEASES INTERNATIONAL Alanna Miller, RARE DISEASES INTERNATIONAL Dr Mohamed Hassany, Ministry of Health & Population - Egypt Diego Fernando Gil Cardozo, FECOER Dr Ana Rath, Orphanet, INSERM Dr S. Christy Rohani-Montez, PhD 🦓, Medscape Education Anne-Sophie Chalandon, IFPMA, EFPIA - European Federation of Pharmaceutical Industries and Associations and EUCOPE - European Confederation of Pharmaceutical Entrepreneurs   📩 To our CARE and RDI members, please check your inbox for the following links:   📲 Registration for the webinar  📝 A survey to collect your thoughts on the formalization of the Coalition   Want to learn more about next steps? Read our WHA Resolution Explainer: https://lnkd.in/duBZr2CZ    #RareDiseases #CARECoalition #RDI #GlobalHealth #NextSteps #WHA78 #Webinar #Survey

📢 RDI is pleased to welcome three new members to our global community! 🌍 We’re thrilled to welcome the Center for Ichthyosis Related Members Foundation India, Atrofia Multisistémica España, and the MVA Society! 👏 📍 Center for Ichthyosis Related Members Foundation India began as a WhatsApp support group in 2011 and has since grown into a nonprofit with 92 members across India, Sri Lanka, the UAE, Bangladesh, and parts of Africa. The foundation supports people affected by ichthyosis and associated conditions, builds knowledge among clinicians and the society, and promotes research into diagnosis and the management of the condition. Its founder, Christina Raj, is board member in GlobalSkin and member of the RDI EML Working Group. 📍 Atrofia Multisistémica España, founded in 2024, supports people living with Multiple System Atrophy (MSA) in Spain and raises awareness of this condition. Led by a board of five PLWRD, the organization works to increase public awareness, foster new research, and advocate for the MSA community. 📍 MVA Society, founded in 2024, is a patient advocacy organization focused on the ultra-rare genetic condition Mosaic Variegated Aneuploidy (MVA) syndrome. Its aims are to provide support and trusted information, build a community of practice and patient cohort, and advance research into screening, surveillance, and treatment. The Society is active in the UK, Spain, Portugal, the USA, Brazil, and Australia, and is seeking to connect with additional families. Welcome to the RDI community! 🌐 #RareDiseases #GlobalHealth #PatientAdvocacy #RDICommunity #PLWRD #NewMembers

📣 Save the Date! Join us on 28 August from 14:00 to 15:30 CEST for the next WHA Coalition Webinar on Next Steps. This session will feature speakers from the Ministry of Health and civil society organizations who will share key updates, discuss the formalization of the Coalition, and explore next steps to implement the WHA Resolution on Rare Diseases, including the development of the Global Action Plan.   The speakers will be:   Kirsten Johnson, RARE DISEASES INTERNATIONAL Alexandra Heumber Perry, RARE DISEASES INTERNATIONAL Alanna Miller, RARE DISEASES INTERNATIONAL Dr Mohamed Hassany, Ministry of Health & Population - Egypt Diego Fernando Gil Cardozo, FECOER Dr Ana Rath, Orphanet, INSERM Dr S. Christy Rohani-Montez, PhD 🦓, Medscape Education Anne-Sophie Chalandon, IFPMA, EFPIA - European Federation of Pharmaceutical Industries and Associations and EUCOPE - European Confederation of Pharmaceutical Entrepreneurs   📩 To our CARE and RDI members, please check your inbox for the following links:   📲 Registration for the webinar  📝 A survey to collect your thoughts on the formalization of the Coalition   Want to learn more about next steps? Read our WHA Resolution Explainer: https://lnkd.in/duBZr2CZ    #RareDiseases #CARECoalition #RDI #GlobalHealth #NextSteps #WHA78 #Webinar #Survey

📢 RDI is pleased to welcome two new members to our global community! 🌎 We’re thrilled to welcome Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF) and FUPIER Investigación en Enfermedades Raras! 👏 📍 Fundación Colombiana para Enfermedades Huérfanas (FUNCOLEHF) is a Colombian patient advocacy foundation championing people living with rare diseases. Founded in 2010, FUNCOLEHF works to overcome indifference through comprehensive support grounded in human dignity, and contributes its expertise to public policy, research, and science to improve quality of life of PLWRD and their families. 📍 FUPIER Investigación en Enfermedades Raras is an Uruguayan foundation dedicated to scientific research on rare diseases. Founded in 2019, FUPIER funds research toward new treatments, collaborates with institutions in and beyond Uruguay to speed accurate diagnosis, and advances public policies for better healthcare access, social inclusion, and support systems. FUPIER strives to enhance the quality of life for those affected by rare conditions, including those who remain undiagnosed. Welcome to the RDI community! 🌐 #RareDiseases #GlobalHealth #PatientAdvocacy #RDICommunity #PLWRD #NewMembers

I look forward to joining colleagues and partners at #UDNI2025 in Rio de Janeiro. This conference is an important milestone to strengthen collaboration and innovation for undiagnosed and rare diseases. I encourage you to register and submit your abstract before August 28: www.udni2025.org.br Undiagnosed Diseases Network (UDN) Wilhelm Foundation Roberto Giugliani Cederroth Helene Mikk Cederroth Dave Pearce Gareth Baynam Domenica Taruscio RARE DISEASES INTERNATIONAL Roberto Giugliani #RareDiseases #UDNI2025 #GlobalHealth

On 12 August, RDI CEO Alexandra Heumber Perry participated online in the conference “A Glimpse into Life-Threatening Rare Diseases and Their Impact on Mental Health and Physical Disability in Patients”, hosted by the Modern Sciences and Arts University in Cairo, Egypt. She highlighted the momentum from WHA78: for the first time, rare diseases are recognised as a global public health priority by all 194 countries—a milestone that sets in motion a 10-year Global Action Plan to be adopted in 2028. “This is much more than symbolic — it launches the development of a 10-year Global Action Plan on Rare Diseases, to be adopted in 2028” — Alexandra Heumber Perry 🌍 For countries like Egypt, the resolution offers political leverage, a roadmap for national integration, and regional collaboration—empowering patient organisations to advocate for registries, newborn screening, and access to essential medicines. 🤝 Alexandra underscored the need for Ministries of Health and National Drug Authorities to work hand in hand: integrate rare diseases into UHC and national strategies, build registries, expand newborn screening, and train health workers—while fast-tracking orphan medicines, ensuring affordability and quality, promoting pooled procurement, and updating national formularies. At RDI, we work to ensure every person has equitable access to diagnosis, treatment, and care—wherever they live. 🇪🇬 We applaud Egypt for its leadership at the global level—initiating the WHA Resolution on Rare Diseases and helping to make rare diseases a global public health priority—and, at the national level, for adopting measures and dedicating resources to improve the lives of people living with a rare disease in Egypt. 👉 More information about the conference: https://lnkd.in/d3tGk6qj Mohamed Hassany Modern Sciences and Arts University #RareDiseases #RDI #WHA78 #GlobalHealth #UHC #Egypt #MSA #MSAUniversity #MSAInternationalConference #MSAPHARMA

Last days to apply for the Working Group on Care Pathway! 👇📣

🌐 The Coalition formed earlier this year to support adoption of the WHA Resolution on Rare Diseases is rebranding as it shifts to implementation. From now on, we’ll be called the Coalition for Advocacy for Rare Disease Equity (CARE).   🤝🏼 The CARE now brings together 288 members across stakeholder groups — patient organizations, academic and research institutions, and clinical centers and hospitals. Now is the moment to turn momentum into action so that persons living with a rare disease see real impact. Our focus is to help ensure the Resolution’s provisions — notably the 10-year Global Action Plan on Rare Diseases — are implemented at national and international levels and are grounded in local realities. 📩 To our Coalition and RDI members, please check your inbox for the following links: 🗣️ Registration for our webinar on 28 August 2025 📝 A survey to collect your thoughts on the formalization of the Coalition Want to learn more about next steps? Read our WHA Resolution Explainer: https://lnkd.in/duBZr2CZ #RareDiseases #CARECoalition #RDI #GlobalHealth #WHA78 #Webinar #Survey

Today is #InternationalYouthDay 🗣️   At Rare Diseases International, through our first RDI Youth Leadership Programme —coordinated by Alba Parejo, Sara Brambilla, and Alanna Miller—we’re building a global cohort of young advocates from diverse regions and backgrounds, ready to raise their voices and help shape the future of rare disease policy and solutions.   Across the rare disease community, young people are already reshaping how systems listen, learn, and act. From faster diagnosis and fairer access to inclusive policies, youth voices are bringing lived expertise to the table.   “Bring back our voices to your organizations, your Ministries, and your communities. Help ensure that young people are not left on the sidelines. We are not just the leaders of tomorrow—we are already leading today. And with RDI we are ready to work alongside all of you, bringing fresh energy, bold ideas, and lived expertise to this global movement.” Alba Parejo, coordinator of the YLP.   📲 Read more about the RDI Youth Leadership Programme: https://lnkd.in/dGfVNJJp   #RareDiseases #InternationalYouthDay #YouthLeadership #RDIYLP #GlobalHealth

📣 Call for Applications: Working Group on Care Pathway under the Global Network for Rare Diseases #GNRD Rare Diseases International, in collaboration with Rare Care Centre and Wilhelm Foundation, is launching a Working Group to develop a Model Care Pathway for rare Diseases adaptable to different contexts and healthcare settings. 🤝🏼 Multidisciplinary collaboration  🌐 Open to healthcare professionals, PLWRD, advocates and experts  💻 Virtual meetings    🗓️ DEADLINE for application: 25th August, 2025.   By 5th September 2025, all applicants will be notified about the selection results. Please note the kick-off meeting is on 17th September at 1:00 PM CET.    👉 Read the Terms of Reference: https://lnkd.in/dErDBdHc 🔗 Interested in joining? Apply by completing the form: https://lnkd.in/dMJyZkPq #RareDiseases #WorkingGroup #CarePathway