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Victory as rare diseases included in UN Political Declaration on UHC

November 2019

Attendees at the 2019 UN Rare Disease Day Policy Event

Universal health coverage (UHC) means that all individuals and communities receive the health services they need without suffering financial hardship.

Individuals and communities around the world have been fighting for the right to UHC for decades and have made great progress in promoting UHC as fair, smart and overdue.

Strong, equitable health systems that leave no one behind are essential to achieving this goal and are in line with the UN’s 2030 Agenda for Sustainable Development. EURORDIS, Rare Diseases International (RDI) and the wider rare disease community are fighting for people living with a rare disease to be included in UHC.

Tomorrow, 12 December, is Universal Health Coverage Day, when people around the world come together to call for action to make UHC a reality for all. Call on your  national, European and UN/ WHO representatives to keep their promise of health for all on or after UHC Day. UHC Day is organised by the UHC2030 movement, of which RDI recently became a partner.

Progress in 2019

Over 300 million people are living with a rare disease around the world, plus their family members and carers whose lives are also affected. As a result of a rare disease, these people carry a high burden in many aspects of their lives – physically, financially and socially.

For the past two years, EURORDIS and Rare Diseases International (RDI) have actively advocated for the inclusion of rare diseases in the UN Political Declaration on UHC.

On 23 September of this year, this became a reality when UN Member States adopted the historical Political Declaration on UHC including a commitment to strengthen efforts to address rare diseases, the first time rare diseases have been included within a UN declaration adopted by all 193 Member States.

Paloma Tejada, Director, RDI, said, “If we are really serious about leaving no one behind, we must plan and build health and care systems to achieve UHC that is inclusive of the needs of people living with a rare disease. RDI and EURORDIS, on behalf of the hundreds of patient organisations we represent around the world, will continue to cooperate in efforts to ensure rare diseases are included in upcoming UHC actions, policy and legislation at both the international and national levels.”

Joint EURORDIS and Rare Disease International advocacy actions intensified over the last 12 months in the lead up to the adoption of the new UN Political Declaration on UHC. Throughout this period, RDI, EURORDIS and national alliances around the world rallied together to call on key national ambassadors to the UN in New York and Geneva to elevate the cause of people affected by a rare disease.

  • In December 2018, RDI was the only NGO invited to speak in a panel at the UHC Day event of the Group of Friends of UHC in New York, an informal platform for UN Member States, led by Japan, that seek to support and advocate for achieving UHC by 2030;
  • In February 2019 at our Rare Disease Day 2019 Policy Event at the United Nations, the NGO Committee for Rare Diseases (steered by EURORDIS, RDI and Ågrenska) called for the integration of rare diseases into the then upcoming landmark UN Political Declaration on UHC. Multiple ambassadors and representatives at the UN gave their support at the event, which was hosted by the Permanent Mission of Estonia to the UN and co-hosted by 14 other national Permanent Missions to the UN;
  • In March 2019, EURORDIS and RDI met with Dr Tedros, Director-General of the World Health Organization (WHO), to discuss further collaboration and the importance of the inclusion of rare diseases in UHC;
  • In May 2019, RDI organized two events on rare diseases in the context of the World Health Assembly, one of them being officially sponsored by EU, Romania, Kuwait and nine other Member States, gaining further momentum;
  • In April 2019, RDI published the position paper Rare Diseases: Leaving no one behind in Universal Health Coverage; and
  • In July-August 2019, RDI and EURORDIS led a joint campaign with 13 national rare disease alliances to reach out to national ministries of health and foreign affairs; and to Permanent Missions to the UN.  

Looking to a future with UHC

The adoption of a Political Declaration on UHC that is inclusive of rare diseases is a turning point with immediate impact, opening up opportunities and creating potential for broad impact for people living with a rare disease. Our community can be proud of this victory.

However, it will take a decade for this to fully materialise. There is still much to be done to achieve #HealthForAll.

We now look to national governments to keep their promise and to progressively ensure that health and social care systems are adapted to and inclusive of the needs of people living with a rare disease.

Questions about UHC? Please contact Clara Hervas, EURORDIS Public Affairs Manager and Policy Coordinator, NGO Committee for Rare Diseases:

Eva Bearryman, Communications Manager, EURORDIS