To celebrate Rare Disease Day, the management committee has organized its 15th edition on Monday 28th of February at Caixa Forum (Av. Francesc Ferrer i Guàrdia, 6-8, Barcelona).
The slogan chosen from Europe for this edition is “Rare is many. Rare is strong. Rare is proud”, which highlights the resilience and willpower of the community against rare diseases. In Catalonia, with the slogan “Junts fem pinya”, we highlight the need for educational and divulgation actions to create a more inclusive and empathetic society.
WHICH IS THE AIM OF THE EVENTS?
Rare Disease Day is an opportunity to raise awareness of people who suffer from rare diseases around the world that are unable to have equal access to diagnosis, treatment, care and social opportunities, as Rare Diseases Day says. Moreover, provide them with ways for them to be more informed so they can participate more and more in decision-making regarding ethics, research and access to drugs.
The day starts with an opening act, followed by three people who suffer from rare diseases, Epidermolysis bullosa, Möbius syndrome and Arthrogryposis multiplex congenita, so they can share their experiences, worries and need to find multidisciplinary and inter-hospital approach networks for rare diseases to improve their quality of life.
The first session will be dedicated to rare diseases research, where four of the projects funded by La Marató de TV3 from 2019 will be presented.
The second session, “Patient-professional communication dilemmas”, invites you to think about the needs and worries of people who live with rare diseases and brings us closer to the dilemmas regarding basic research advances and how are they shared with society.
When the events finish, those professionals who stand out in their career and professional commitment to rare diseases will be given recognition by the management committee of Rare Disease Day. #JUNTSFEMPINYA
WHO IS IT FOR?
In Catalonia, with the slogan “Junts fem pinya), we highlight the need for educational and divulgation actions to give health care professionals the tools through a clinical case to get to know the need to have a multidisciplinary approach, an early diagnosis and better comprehensive care. This day is also for people who suffer from rare diseases and those close to them. This divulgation event allows us to share a space for those affected, health care professionals, researchers and institutional representatives to raise awareness for rare diseases.
We thank you in advance for participating and we ask you to share this invitation with all those in your institution that you believe would be interested in attending. It is free and you can sign up through the following link.