Edition of 16 December 2022

To mark this year's Universal Health Coverage Day on 12th December, Rare Diseases International organised in collaboration with UHC2030 a virtual policy event bringing together over 150 attendees in order to discuss the key asks that the rare disease community wishes to make in this area.

Key speakers from around the world participated in this event which saw proposals for concrete actions to male health equity for all a reality. Participants highlighted that health coverage can not truly be universal unless and until the needs of people living with rare diseases are addressed. To do this, those same people should be involved in the policy-making process. A meeting summary report with the key recommendations is available.

Key recommendations include:

• Investment in research, development and health services
• Evaluation of conformity of systems in place with human rights obligations
• Inclusion of UHC in international, national and regional legal and policy frameworks
• Inclusion of those living with a rare disease in policy making
• Developing expertise exchange mechanisms to improve training
• Treating human rights as part of the rule of law

"Access to health care is a fundamental right for all", said Smith Sadasivan, member of the UHC2030 Steering Committee, "through the demand for UHC to include rare diseases, it is a question of unity for all, of coverage for all, so that no one is left behind."

To gather feedback from the community, RDI has opened a survey (ending today) to gauge opinion on a number of proposed actions for a potential World Health Organization on "Universal Health Coverage for Rare Diseases" for which RDI is aiming in May 2024.