Rare Disease Day is coming!
We are now just a few short weeks away from Rare Disease Day 2023 on 28 February! Coordinated each year by EURORDIS, the day is a key moment for adding momentum to rare disease advocacy work and raising awareness of rare diseases on a global scale. To learn more about Rare Disease Day and all the exciting activities taking place this year, you can watch the official video below and take a look at the ‘Events Near You’ tab on their website.
To launch the month of Rare Disease Day, the 2023 EURORDIS Black Pearl Awards will be held on 21 February in Brussels. In advance of the event, EURORDIS has been announcing some of this year's awardees. Most recently, it was revealed that the Policy Maker Award will be given to Dr Stelios Kympouropoulos in recognition of his work as both an MEP and advocate to affect positive legislative change for people living with rare diseases . He has been highly involved in efforts to introduce a unified European strategy for rare diseases, and in 2022 played a key role in securing the inclusion of people living with rare diseases in the Resolution on a common European Action on Care. Recently, he has also become an advocate for members of the rare disease community who have been affected by the invasion of Ukraine. Finalists have also been announced for this year's photo award, and the public are invited to vote now for their favourite photo. To read more about the awards and the other awardees who have already been announced, see the article in the 18 January issue of OrphaNews. Registration for the event is open until 6 February for both in-person and virtual attendance.
In the lead-up to the day, EURORDIS is also hosting the second edition of Rare Disease Week in Brussels from 6-9 February. The week consists of a four-day programme of meetings, conferences and other activities meant to empower patient advocates to take action at the European level and affect real change. The week also seeks to call attention to rare diseases for EU-level policy-makers. Activities will include a meeting with the European Commission and a conference on Orphan Medicinal Products, among others. You can find the full programme and more on the EURORDIS website.
