ERN eUROGEN joined the recent public webinar, *Towards a WHA Resolution on Rare Diseases 2025*, held on 30 August 2024. This event, co-hosted by Rare Diseases International (RDI) and the governments of Egypt, Qatar, and Spain, marked an essential step in advancing global awareness and action for rare diseases.
The webinar brought together over 300 participants, including numerous representatives from Ministries of Health worldwide, signalling the growing momentum behind rare disease advocacy at a global level. The insightful contributions from key speakers and the active engagement of attendees made this event a truly enriching experience.
As the European Reference Network for Rare Uro-Recto-Genital Diseases and Complex Conditions, ERN eUROGEN was particularly inspired by the collaborative spirit demonstrated during the discussions. The WHA Resolution on Rare Diseases holds the potential to elevate the visibility of rare diseases on the global health agenda, creating pathways for improved diagnosis, care, and treatment options for the millions of people living with these conditions.
Our work within ERN eUROGEN has long underscored the importance of cross-border collaboration and knowledge-sharing to improve patient outcomes for rare uro-recto-genital diseases. We are excited to see countries such as Egypt, Spain, Qatar, Malaysia, and France taking a leading role in driving this initiative forward. This international collaboration mirrors the ethos of our own network, where working together across countries is vital to addressing the complex needs of rare disease patients.
The #Resolution4Rare campaign is a call to action for all of us to support a Global Action Plan on Rare Diseases. This plan aims to ensure equitable access to healthcare, improved research funding, and stronger policy frameworks for rare diseases, which align with ERN eUROGEN’s mission. We encourage all stakeholders within our network to stay informed and actively engage in this process, as it represents a pivotal opportunity to advocate for better care pathways and resources for the rare disease community.
If you missed the event, you can view highlights and watch the full webinar or learn more about the WHA Resolution on the dedicated website.
In the coming months, we look forward to continuing our collaboration with RDI and other Member States as we work toward making the WHA Resolution a reality in 2025. Together, we can strengthen the global rare disease movement and ensure a brighter future for all affected by rare uro-recto-genital diseases and other complex conditions.
If you have any questions about the webinar or how to engage and support the WHA Resolution in general, please contact RDI’s Global Policy Coordinator Alanna Miller.
Let’s keep pushing forward to make #Resolution4Rare a reality!
