RDI and partners call on UN Member States to realise UHC for the global rare disease community
On 21st September, Rare Diseases International (RDI) partnered with EURORDIS, Ågrenska, and FEDER to hold a formal side-event to the United Nations high-level meeting on universal health coverage (UHC) titled “Engaging the UN System and Member States to Achieve UHC for PLWRDD: A Blueprint for Leaving No One Behind.” The purpose of this event was to highlight the importance of including rare diseases in efforts to improve UHC, as it can only truly be universal if it meets the needs of the 300 million people living with rare diseases worldwide.
Following opening statements from Her Majesty the Queen Letizia of Spain and Her Majesty the Queen Silvia of Sweden, addresses were made by various government representatives from Spain, Sweden, Qatar, France, Malaysia, Canada, Brazil, the United Arab Emirates, and the European Commission. Statements were also made by the World Health Organization, the World Bank, the Office of the UN High Commissioner for Human Rights, the NGO Committee for Rare Diseases, Ågrenska, and the Conference of NGOs in Consultative Relationship with the United Nations.
This broad, high-level participation is reflective of the global political momentum for rare diseases that has been growing over recent years. In 2019, rare diseases were specifically mentioned in the Political Declaration on UHC. Subsequently, the Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families was adopted in 2021, marking a huge step forward for supporting the international rare disease community.
Despite the promise of this momentum, however, today people living with rare diseases still face a number of barriers to accessing healthcare, and experience a high level of unmet medical need. Across the board, speakers at the event called for increased global support for the rare disease community through sharing expertise, investing in scientific research, and relieving the economic burden of rare diseases. Pursuing these goals would also help advance the UN’s larger goals of promoting global human rights and sustainability.
All the perspectives shared during the event serve to highlight the importance of constructing a global framework for action on rare diseases. This is why RDI and partners are calling for the adoption of a World Health Assembly Resolution on Rare Diseases, which capitalises on the current political will to substantially improve the lives of all people living with rare diseases by ensuring that UHC is truly universal.
Photo credit: Rare Diseases International
