18 March 2019, Geneva – Today, Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, and Durhane Wong-Rieger, Chair of the Council of Rare Diseases International and President of the Canadian Organization for Rare Disorders, met with Dr Tedros, Director-General of the World Health Organization (WHO), to discuss a shared vision for the more than 300 million people living with a rare disease across the world. Together, Rare Diseases International (RDI), the global alliance of people living with a rare disease, and EURORDIS, an alliance of over 800 rare disease patient organisations, have been advocating over the last two years to make rare diseases a global health priority at the WHO. EURORDIS and RDI identified areas of collaboration with the WHO to shape a partnership, which will be formalised in a Memorandum of Understanding. This collaboration will set out ambitious goals that contribute to the WHO’s 13th General Programme of Work (GPW).

Transformative progress

In 2018 Dr Tedros released a statement of support in which he called for universal health coverage to include diagnosis and treatment for rare diseases, so as to provide for a world in which no one is left behind, including people living with a rare disease.

At this point, he welcomed future opportunities for further discussion with the rare disease community on how to strengthen cooperation to ensure people living with a rare disease can access the health services they need.

Mr Le Cam, who is also a member of the RDI Council and Chair of the RDI Advocacy Committee, commented, “We thank Dr Tedros and his WHO leadership team for their support for the rare disease community. One year on from his statement, we are pleased to meet with him to discuss next steps that the WHO and rare disease community can take to move towards our proposed collaborative framework within the context of the 2030 Sustainable Development Agenda and the WHO GPW 2019-2023.

His continued commitment sends a strong message of support to patients around the world. We are also asking the WHO to support our call for the integration of rare diseases into universal health coverage (UHC).”

Today’s meeting follows the recent Rare Disease Day Policy Event at the United Nations’ New York Headquarters, at which EURORDIS, Rare Diseases International and the NGO Committee for Rare Diseases called for the integration of rare diseases into the upcoming landmark UN political declaration on UHC.