Rare Disease Day 2022: Share your colours
Monday 28 February 2022 marks the fifteenth edition of Rare Disease Day, a unique opportunity to raise awareness amongst the general public and decision-makers on rare diseases. This year, thousands of events are organised in over 100 countries to shed light on people living with a rare disease and their families under the slogan “Share you colours”.
To mark this occasion, EURORDIS and partners have launched the Light up for Rare Campaign and are inviting people worldwide to light their homes with the Rare Disease Day colours at 7 PM (local time) on 28 February 2022. Local and national buildings are also expected to be illuminated at the same time in order to create a Global Chain of Lights.
The NGO Committee for Rare Diseases, the Ågrenska Foundation, Rare Diseases International (RDI), and EURORDIS-Rare Diseases Europe are holding a 2022 global Rare Disease Day event entitled "Rare Diseases: A Global Priority for Equity". The event will be a celebration of the adoption of the UN Resolution on “Addressing the challenges of Persons Living with a Rare Disease and their families” this year and will be an opportunity to discuss its implementation at international, regional, and national levels, with a focus on the African region. The event will take place on 28 February 2022 from 10.30 (GST) at the Sweden Pavilion, World Expo, Dubai, United Arab Emirates as well as online.
In the framework of the French Presidency of the Council of the European Union and under the high patronage of the French Ministry of Higher Education, Research and Innovation, the French Institute for Health and Medical Research (Inserm) is organising a scientific symposium on Rare Diseases. The conference will be held on-site and online on 28 February from 09.00 (CET) at the Ministry of Solidarity and Health, Paris, France. The objective of this conference will be to review the current state of research and the means implemented for the diagnosis, care and treatment of rare diseases, and the expected prospects for increased collaboration between Member States of the European Union, public and private partners, research actors on a European scale. France’s Ministry of Health and Solidarity is also organising a high-level conference entitled “Ministerial Conference on Research and Care Pathways: For a European policy on rare diseases” on 28 February. This conference will bring together political figures from across Europe to set out recommendations for changes to European legislation on rare diseases, building on the momentum generated by EURORDIS’ call for a new European policy, following the publication of the Rare 2030 recommendations to mark Rare Disease Day 2021. A full report from this conference will be published in the next OrphaNews International.
