RDI’s mission is to advocate for rare diseases as an international public health and human rights priority and to raise awareness of rare diseases worldwide.
RDI sits on the Executive Board of the NGO Committee for Rare Diseases, a committee established under the umbrella of the Conference of NGOs in Consultative Relationship with the United Nations (CoNGO). We partner with the Committee to advocate at the United Nations. The goal is to ensure that no one person living with a rare disease is left behind, in line with the UN’s Agenda 2030: the Sustainable Development Goals (SDGs), and that the human rights of PLWRD and their families are recognized and protected.
As part of this work, the global rare disease community – represented by RDI, the NGO Committee for Rare Diseases, and EURORDIS – lead a campaign calling for the adoption of a UN General Assembly Resolution on the Challenges of Persons Living with a Rare Disease.
United Nations Advocacy Priority Areas:
Universal health coverage (UHC) ensures all people, everywhere, can access quality essential health services without suffering financial hardship. UHC will not be truly universal unless the needs of persons living with a rare disease are addressed.
“WHO’s top priority is to support countries on the path towards universal health coverage, with the aim of ensuring that all people can access the health services they need, when and where they need them, without facing financial hardship. This includes access to diagnosis and treatment for people who suffer from rare diseases.” Dr Tedros Adhanom Ghebreyesus, Rare Disease Day Statement, February 2018.
RDI launched a global campaign to disseminate this important message and led a number of actions, culminating in the inclusion of rare diseases in the UN Political Declaration on UHC in September 2019. RDI’s campaign has now shifted towards a call for implementation of the commitments to UHC and rare diseases made within the Declaration at both global and national level.
Rare diseases are often chronic, highly complex, progressive and severely disabling conditions frequently affecting life expectancy and generating specific care needs. Most people living with a rare disease are also living with disability.
The UN Convention on the Rights of Persons with Disabilities (UNCRPD) (2006) has given organisations of persons with disabilities, including those of people living with disabling health conditions such as rare diseases, a strong legal framework to advocate for their rights
However, as there are still many barriers to the full enjoyment of these rights, RDI raises awareness and advocates for the implementation of UN policies and practices targeting persons living with a rare disease and disability.
RDI aims to promote policy supporting the inclusion and participation of persons living with a rare disease in society and the respect of their human rights, including the rights to life, liberty, security of person, education, work, adequate standard of living and the enjoyment of the highest attainable standard of physical and mental health.
For this, RDI together with the NGO Committee for Rare Diseases, liaises primarily with the Office of the High Commissioner for Human Rights (OHCHR) and advocates the Human Rights Council (HRC).
RDI aims to ensure that in addressing the very high priority of non-communicable diseases (NCDs), the UN and its Member States do not leave behind significant but often neglected chronic rare diseases that cause suffering and have an economic and societal impact.