Since its beginning in 2008, Rare Disease Day has been instrumental for the rare disease in building our advocacy at national level and connection with an international rare disease community that is global and diverse – but united in purpose and action, and that has supported our policy actions nationally and internationally.
By sharing our colors through social media, events, lighting up buildings, monuments and homes, sharing experiences online and with friends, calling on policy makers, all of us living with a rare disease aim to change and improve the lives of 300 million people worldwide.
The theme of the RDD 2024 campaign is Equity. The call to action is: Share your colors! Share your story! In Romania, ITHACA members and the Romanian National Alliance for Rare Diseases are developing activities from 19th of January 2024 and 19th of March 2024.
Our goals for 2024 are:
● To promote a positive image for rare diseases by sharing the stories of patients, the professionals involved and their families.
● To involve local and national authorities in solving the problems of patients affected by rare diseases.
● To initiate community dialogue and to create community support networks.
● To stimulate the commitment of children and young people in supporting people with rare diseases in their social inclusion process.
● To know and recognize those involved in the field of rare diseases
Target group for our campaign: patients with rare diseases and rare cancers, their family members, specialists involved in the diagnosis and management of rare diseases and rare cancers, medical, social, digital and educational service providers involved in patient care, centers of expertise , recovery, representatives of the pharmaceutical industry, national and local authorities, but also the community in general (for better understanding, acceptance and social inclusion).
To better inform the general public about the needs and actions existing at the national level in the field of rare diseases, we will organize several events at the national level:
– Launch of the 2023 Rare Diseases Day Campaign on January 19th, 2024 in Zalau at the final conference of the ECOU project
– Information and awareness campaign in universities, schools and kindergartens.
– Campaign in the community: lighting buildings, conferences of RONARD members, educational activities in schools, art exhibitions – January – March 2024;
– Participation in European events organized by Eurordis;
– Organization of a national conference on 29 February in Bucharest.
– Patients’ journey workshop – March 1, 2024, Bucharest.
– Rare Disease Marathon – messages of support for rare diseases throughout February.