The Rare Disease Day campaign began in Romania in 2008. Each year, patient organisations organise marches, conferences and the distribution of flyers to promote and raise awareness about rare diseases all across the country.
In 2020 there were a wide range of awareness raising events held in Romania to celebrate Rare Disease Day. Including two national conferences in Sibiu and Bucharest on the topic ‘Reframe Rare Disease Day’, a Round Table event on the role of digital health, coordination of care and the integration of rare diseases into the healthcare system and training courses held for doctors and nurses. In addition to these educational events there was an art exhibition ‘captive in my body’ and a book launch describing the challenges of finding a diagnosis for those living with rare diseases.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].