New report from the Second High Level Event of the NGO Committee for Rare Diseases published
The Second High Level Event of the NGO Committee for Rare Diseases took place on 21 February 2019 at the United Nations in New York. It was organised by EURORDIS, Rare Diseases International and Ågrenska and was under the patronage of the HRH The Grand Duchess of Luxembourg. It was one of the key events within the context of Rare Disease Day. An all-day roundtable was organised bringing together around 100 participants from the rare disease community interested in collaborating for the issue of rare disease to be recognised as a higher health priority level within the United Nations.
A report of the meeting has now been published. It briefly sums up the impact rare diseases have on patients and highlight the need for improving social awareness of rare diseases and their integration in health and social policies. It also clearly emphasizes the importance of improving their visibility in health information systems and empowering patients. Indeed, they can play a major role in advocacy policy or research via multi-stakeholder collaborations.
The report also describes the way rare disease policy is aligned with the United Nations’ Sustainable Development Goals. For instance, it can bring improvements for the goals of no poverty, good health and well-being, quality education, gender equality, decent work and economic growth, industry/innovation/infrastructure, reduced inequalities and partnerships for the goals.
It also reiterates how rare disease policies and advancements are inscribed in the framework of the Universal Health Coverage and describes how the meeting was the occasion to call for a United Nations General Assembly Resolution.
Finally, the next steps planned for the empowerment of people affected by rare diseases are listed in the document setting a sort of template for the future of rare disease policy planning and implementation on both a short-term and long-term basis.