The NGO Committee for Rare Diseases and its partners, including Rare Diseases International, the Ågrenska Foundation and EURORDIS, have published a report of the 2022 global Rare Disease Day event entitled “Rare Diseases: A Global Priority for Equity” held under the patronage of the Queen Silvia of Sweden. The event took place during the World Expo in Dubai, United Arab Emirates, as well as online, and celebrated the adoption of the UN Resolution on “Addressing the challenges of Persons Living with a Rare Disease and their families”.
The event marked the Fourth High-level Meeting of the NGO Committee for Rare Diseases and was an opportunity to discuss the implementation of the Resolution at the national and international levels as well as to identify potential international cooperation in the field of rare diseases with a focus on the African continent. The event saw the participation of 1017 attendants, both online and onsite, including from UN Agencies, UN Member States, Global umbrella organisations, and National and International patient communities, with a total of 104 countries represented.
Stakeholders discussed the benefits of the UN Resolution for the rare disease community, including the political commitment it represents at the international level, setting grounds for advocacy initiatives at the national level. The UN resolution also sets up clear guidelines on which to follow-up, including in terms of human rights and inclusion, appropriate care, national action, inclusion of PLWRD into the monitoring and evaluation of the UN Sustainable Development Goals (SDGs), and the need to monitor progress in the field of rare diseases to the General Assembly. Stakeholders thus agreed that the future advocacy campaigns for people living with a rare disease should aim to achieve global equity for rare diseases, based on the principle of non-discrimination, while advancing the key pillars of the SDGs, including access to education and decent work, reducing poverty, tackling gender inequality, and supporting participation in society.
Concerning the African region, participants raised concerns about the challenges faced by people living with a rare disease in several countries, including in terms of access to diagnosis, access to healthcare as well as the stigmatisation they face and the lack of adequate policies. Stakeholders established a roadmap and recommendations for future advocacy in the region, emphasising the importance of local education on rare diseases to foster inclusion, the training of patient organisations and their members to ensure strong country leadership, as well as the production of meaningful data on rare diseases and the work on public policies. Stakeholders agreed on the importance of supporting local efforts at the international level, including in terms of coordinated advocacy efforts and capacity building and patient group empowerment.
Stakeholders identified next steps for the rare diseases global community, including working with the WHO to strengthen healthcare systems and achieve universal health coverage for PLWRD and identifying other UN bodies to develop a holistic approach for rare diseases.