Debra Bellon
Strategic Engagement Manager, Rare Diseases International
Alexandra Heumber Perry
Chief Executive Officer, Rare Diseases International
Explore the global impact of rare diseases in an interactive initiative showcasing achievements and advocating for 300 million people with a rare disease.
Rare diseases, once seen as isolated conditions, now reflect common and complex challenges. Mobilisation of civil society has prompted scientific advancements and improved healthcare emerging policies across countries.
While promising for the 300 million Persons Living with a Rare Disease (PLWRD) worldwide, they still encounter persistent challenges globally, including diagnosis delays, treatment access issues, social stigma and financial burdens.
Rare disease awareness initiative
For Rare Disease Day 2024, Rare Diseases International (RDI), the global alliance for rare diseases, is seeking to bring awareness to the challenges faced by people with rare diseases and highlight the many achievements of its community members.
The alliance is launching ‘Mapping Rare’, an interactive map highlighting key accomplishments and initiatives created by and for the rare disease community. While the project will eventually document achievements across the world, the initial launch will focus on 12 countries.
Examples include the creation of a national rare disease network in Canada, a successful campaign to replace offensive technology used in the full name of Fragile X Syndrome, and a policy change to allow Tanzanian children with rare diseases to access suitable education options.
By actively advocating for the
rights of PLWRD, the rare disease
community can ensure that PLWRD are seen.
Advocating for rare disease rights
Mapping Rare aims to send the message that, by actively advocating for the rights of PLWRD, the rare disease community can ensure that PLWRD are seen, recognised and accounted for by policymakers and healthcare systems.
The project draws on years of advocacy by RDI and its members at the international and national levels and seeks to build on the political momentum that has been growing since the first-ever United Nations resolution on rare diseases in 2021. This recognition and the introduction of rare diseases in the scope of Universal Health Coverage provide a pivotal opportunity to address the challenges of PLWRD and their families.
Global action plan for rare disease
RDI is now calling on the World Health Assembly to adopt a Global Action Plan on rare diseases as the most effective way to ensure that PLWRD in all countries have access to the care and services they need.
As one of the building blocks of this project, Mapping Rare will serve as a tool that raises awareness, showcases achievements and demonstrates the strength of the rare disease community.