International advocacy improves the visibility of Persons Living with a Rare Disease (PLWRD) and families worldwide and advances rare diseases as an international policy priority.
RDI represents the global rare disease community and our members at key international institutions, including the United Nations and the World Health Organization.
Working together with multiple civil society stakeholders, we call for equity for PLWRD and help shape international policy.
Advocacy PrioritIES
Why Advocate at the Global Level?
- Shape regional and international policies and actions that advance health and social equity
- Elevate the voice of rare disease organisations and PLWRD around the globe
- Promote international collaboration between countries and across stakeholders
- Advance rare diseases in the UN System, Agenda 2030 and the Sustainable Development Goals
RDI at the UN and the WHO
RDI is on the Executive Board of the NGO Committee for Rare Diseases, a committee established under the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). As a committee under CoNGO, the NGO Committee participates in UN consultations and decision-making.
In 2021 the global rare disease community led by RDI, the NGO Committee for Rare Diseases, and EURORDIS achieved the adoption of the first-ever UN Resolution on “Adressing the Challenges of Persons Living with a Rare Disease and their Families“.
In 2024, RDI was granted special consultative status with the United Nations Economic and Social Council (ECOSOC).
Consultative status will enable RDI to engage with ECOSOC, the Human Rights Council, and the UN system as a whole in many different ways. For example, RDI will be able to participate in sessions, events and conferences at the UN Headquarters in New York and the UN Offices in Geneva and Vienna. RDI will also be able to submit written statements on topics related to its areas of expertise to be circulated to the Council, and may in some cases be called upon to make oral statements.
RDI was also admitted into official relations with the World Health Organization at the 155th session of the WHO Executive Board held from 3-4 June, 2024 in Geneva. This status gives RDI new opportunities to contribute expertise, insights and perspectives from the rare disease community to the development of policies and strategies within the WHO framework by increasing awareness on rare diseases and their visibility, identifying needs of the global rare disease community, and mapping available technical resources in rare diseases. It underscores the importance of raising the voices of those impacted by rare diseases and reinforces the principles of patient-centred healthcare within the global health agenda.