Month: August 2024

Rare Diseases International alongside the member organization Federación Española de Enfermedades Raras (FEDER), applauds Spain for joining the Arab Republic of Egypt and the State of Qatar in sponsoring a Resolution on Rare Diseases at the World Health Assembly 2025:
« Rare Diseases: A Priority for Global Health Equity and Inclusion. »

With 300 million people globally living with rare diseases facing ongoing challenges such as delayed diagnosis, limited access to treatment, and financial burdens, RDI underscores the need for collective and multisectoral action to prioritize rare diseases within global health. The WHA resolution aims to establish a comprehensive global framework to address these challenges by raising awareness, improving diagnosis, enhancing access to care, and fostering research and development of therapies.

Find the the joint Press Note in English here

Find the joint Press Note in Spanish here

Find FEDER’s annoucement here 

We are honored to announce that Dr. Mónica García Gómez, the Minister of Health, will be joining us at our upcoming public webinar on 30 August.

RDI calls upon Member States to join Spain, Egypt and Qatar in cosponsoring this initiative.

Rare Diseases International applauds the Arab Republic of Egypt for sponsoring a resolution entitled “Rare Diseases: A Priority for Global Health Equity and Inclusion” at the World Health Assembly (WHA) 78, to be held in May 2025.

The 300 million Persons Living with a Rare Disease (PLWRD) globally continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens. While many regions and countries have made commendable progress in addressing these challenges, progress has not been consistent across all communities. To systemically and sustainably improve the rare disease ecosystem, collective action through a collaborative and multisectoral approach is crucial. To ensure that UHC indeed entails “health for all”, rare diseases need to be made a global health priority.

This WHA Resolution on Rare Diseases will aim to address the challenges facing the rare disease community through a comprehensive global framework that includes raising awareness, improving diagnosis, enhancing access to care and treatment, and fostering research and development of therapies.

RDI now calls upon Member States to join Egypt in cosponsoring this initiative. By adopting a WHA resolution on rare diseases, Member States can strengthen their positions as leaders in healthcare innovation, cement their commitment to health equity and inclusion, and contribute their respective expertise and resources to improve the lives of PLWRD not only nationally, but globally.

The WHA resolution, and ideally the resulting global action plan, will be the catalyst that urges Member States to work together towards enhancing policy processes, advancing research, accelerating innovation, and improving access to care for PLWRD worldwide, and to ensure that PLWRD are included in the critical work being done to advance UHC and inclusion across the globe.