Executive Director, Rare Diseases International (RDI)
Rare Diseases International (RDI) Council Chair;
Asia Pacific Organization for Rare Diseases (APARDO), President;
Canadian Organization for Rare Diseases, CEO
A ground-breaking resolution from the United Nations finally gives visibility to 300 million persons living with a rare disease (PLWRD) and their loved ones worldwide.
To mark Rare Disease Day, the global community celebrates the adoption of the first-ever UN resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.”
The resolution commits the UN to tackle the challenges of this vulnerable community as it strives for social justice, human rights and greater health equity.
Advocating action and change
The adoption of a resolution by all 193 UN Member States is a triumph of grassroots action and coordinated advocacy on a global scale. The civil society partners – Rare Diseases International (RDI), the NGO Committee for Rare Diseases and EURORDIS – progressively expanded support from the UN Member States and agencies while activating a global network of organisations to lead advocacy targeting national authorities and representatives.
Leaving no one behind
Partners worked together to help every country understand that while rare diseases certainly represent a health concern and demand a commitment in terms of universal health coverage, the challenges of PLWRD go far beyond health. We needed to demonstrate to the UN that the challenges of this population are social development concerns and should be addressed by the UN within the Agenda for Sustainable Development, which promises to leave no one behind.
For the rare disease community, this global document represents both a recognition and an instrument for social change and advocacy at the regional, national and local.
The strength of this collaboration is reflected in the final text, which affirms the need for international partnerships and action related to health, education, gender equality, employment, poverty and reduced inequalities. The text also emphasises the responsibility of governments and national policymakers to develop and adopt measures at a national level.
Impact on the rare disease community
The impact of the resolution is in its application for the benefit of persons living with a rare disease and their families. For the rare disease community, this global document represents both a recognition and an instrument for social change and advocacy at the regional, national and local levels. It is a game-changer. When advocating national policymakers and governments, rare disease civil society organisations are now supported by a powerful declaration from the United Nations.
For Rare Diseases International and its members, the next milestone is the development of specific international documents and strategies, as well as collaborations with UN agencies, such as the WHO, to strengthen health and social systems and make a real difference for persons living with a rare disease around the world.