Rare Disease Day 2021 took place on February 28th, 2021. The main objective of this international event is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Our coordinator, Professor Guillaume Jondeau, released a video entitled “VASCERN supports Rare Disease Day!” which talks about the importance of this day, the resources created by VASCERN and how you can share them to raise awareness about the rare vascular diseases in our network. The video is in English with English and French Subtitles.
The official Rare Disease Day video is also available to watch and shines a light on the global community of 300 million people and over 6000 rare diseases, through the portraits and stories of 6 rare disease patients from 6 continents: Angelina, Syafiq, Regina, Tristan, Jon-Kristian and Harvey. Subtitles are available in 36 languages!
Finally our friends at the European Joint Programme on Rare Diseases (EJP-RD) released a video for Rare Disease Day where they answered the web’s most searched questions about rare diseases!
While many of the usual activities had to take place online this year due to COVID-19, the patient advocates and healthcare professionals of our network were active in spreading the word about rare vascular diseases. We encourage you to continue to share our educational materials and remember that at VASCERN, every day is Rare Disease Day!