Achieving health equity for all: Towards a WHA Resolution on rare diseases in 2025
On 30th August 2024, Rare Diseases International (RDI), the Arab Republic of Egypt, the State of Qatar and Spain co-hosted a public webinar on the campaign for a World Health Assembly (WHA) Resolution on Rare Diseases in 2025. The event featured discussions of why such a Resolution is critical, what it can provide to people living with a rare disease (PLWRD) at regional and national initiatives, and what needs to be done in order for the campaign to be a success.
Despite recent global advances in recognising the unmet needs of PLWRD, notably the 2021 UN Resolution on Persons Living with a Rare Disease and their Families, the community still faces a number of significant challenges. In particular, PLWRD continue to experience limited access to treatments and care, delayed diagnosis, and elevated financial burden. These struggles are often exacerbated in low- and middle-income countries (LMIC), where the resources of health systems are limited and specialist services tend to be scarce and difficult to access.
A WHA Resolution on Rare Diseases would help address these challenges by building on the momentum generated by the UN Resolution and instituting a comprehensive, health-focused global framework for rare diseases with clear targets and deadlines for all WHO Member States. The campaign for such a Resolution was initially spearheaded by RDI, with Egypt, Qatar, Spain, Malaysia, and France agreeing to act as co-sponsors. Advocates in other countries such as South Africa have also expresed support for the initiative, with Rare Diseases South Africa issuing a request to the country's Minister of Health to become a co-sponsor.
During last month’s webinar, attendees had the opportunity to hear from high-level representatives from the Egyptian, Spanish and French Ministries of Health about their countries’ commitments to improving the lives of PLWRD. Key stakeholders in the rare disease ecosystem, including Dr Reudiger Krech, Director of Health Promotion at the WHO, also shared their perspectives on the campaign.
Finally, members of RDI spoke about what the Resolution means for them and PLWRD more generally. Representatives from organisations such as the Rare Diseases Lesotho Association and FEDER spoke to the importance of a global framework to legitimise the work of the rare disease community, and to raise awareness of the complex barriers experienced by PLWRD.
“The adoption of the World Health Assembly resolution for persons living with rare diseases by 2025 cannot come soon enough. This resolution is crucial not only for global health but also for ensuring equity and inclusivity. It will help strengthen health systems, empower individuals, and promote multidisciplinary collaboration.” -Nadiah Hanim Abdul Latif, President of the Malaysian Rare Disorders Society.
In closing remarks, RDI CEO Alexandra Heumber Perry restated the critical role of a WHA Resolution on rare diseases in the pursuit of true universal health coverage, and issued a call to action for additional Member States to join the campaign as co-sponsors.
For individuals who wish contribute to the campaign for a WHA Resolution on rare diseases in 2025, RDI has developed an advocacy toolkit with templates for letters to policymakers and social media posts. Over the coming months, RDI will also be sharing customisable social media graphics to which country-specific statistics or information on rare diseases can be added. To see how others have used these graphics, search for posts with the hashtag #Resolution4Rare on Twitter/X and LinkedIn.
