CVBF supports Rare Disease Day 2019: together to give voice to rare diseases

CVBF supports Rare Disease Day 2019: together to give voice to rare diseases

Even this year the 28th of February marks the International Rare Disease Day coordinated by EURORDIS  and CVBF has shown its support to this initiative that is aimed to raise awareness for rare diseases.

A disease is defined as rare in Europe when it affects fewer than 1 out of 2000 and the 50% of rare diseases affect children. The lack of scientific knowledge and quality information on the diseases often results in a delay in diagnosis. Moreover, for many of them there is not an efficacious treatment.  This often results in heavy social and financial burdens on patients and their families. For this reason this initiative launched by EURORDIS intends to draw attention on the theme of rare disease and in particular, this edition is focused on “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.

Since its launch in 2008 as a European initiative, this campaign has been successfully trying to draw the attention of both society and individuals, nations, governments and institutions to the matter of rare diseases, in order to intensify national politics relating to this subject and to heighten institutional standards of dealing with the challenges that a rare disease pose.

CVBF has longstanding experience in the field of rare diseases and paediatric research with many EU funded projects in the field. Even for this reason, CVBF intends to raise awareness about Rare Disease Day through its social network pages and by showing its support on its official website. Moreover, the initiative has been mostly supported through  the participation in the event of KIDS Bari and KIDS Albania, respectively  the first Italian and Albanian Young Persons Advisory Groups (YPAGs) promoted by CVBF in collaboration with the TEDDY Network (European Network of Excellence for Paediatric Clinical Research), the Paediatric Hospital “Giovanni XXIII” and  the University Medical Center of Tirana “Mother Teresa”. Both the YPAGs by realized video, pictures and drawings on the rare diseases theme and shared them through the social networks. For more information about the event click here.

2019-02-28T14:27:19+00:00 28/02/2019|Categories: News & Events|