28th February 2019 will be the twelfth international Rare Disease Day. This annual initiative promoted by EURORDIS, foresees the participation of more than hundreds of organizations from countries and regions all over the world, involved in awareness-raising activities. Even this year TEDDY Network is glad to support the Rare Disease Day and contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
It is friend of Rare Disease Day and shows its support on its official website and social networks. Moreover, the members of KIDS Bari and KIDS Albania, respectively the first Italian and Albanian Young Persons Advisory Groups (YPAGs) promoted by TEDDY Network, have actively participated to the initiative. KIDS Bari has developed a video and realised pictures and drawings of all the members with the Rare Disease Day logo. KIDS Albania participated in a TV show of medicine, talking about Rare Disease Day. Both the groups have shared posts on this topic through the social media.
Rare Disease Day intends to appeal to peoples’ conscience and states’ resources but also encourages common strategies in research and healthcare which could lead to finding solutions for similar problems of each particular disease and hopefully to a better treatment and an improvement of quality of life for those who are affected.
The theme of this year is “Bridging health and social care”, focusing thus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.
TEDDY considers the promotion of research extremely important for Rare Diseases, since they represent the tools by which speed up the achievements in research and benefits for patients. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need.
Have a look at the official video on Rare Diseases Day.