Again this year CVBF is glad to support The Rare Disease Day 2018, that will take place on 28th February 2018, to raise awareness of rare diseases and their impact on patients’ lives amongst the general public and decision-makers. The Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, but soon this initiative spread all over the world involving 94 countries un 2017.
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. Nevertheless, enormous progresses have been made in the last years thanks to the international cooperation in the field of clinical and scientific research as well as to the sharing of scientific knowledge about all rare diseases.
Therefore, it is important to continue along this pathway to further support rare disease patients and their families. To this aim, the Rare Disease Day has taken place every year since 2008, to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
For this tenth edition of the Rare Disease Day, a special attention will be paid to the crucial role that patients play in research. Several initiatives have been, indeed, carried out over the last years with the scope to sensitize the clinical world and encourage the patient involvement in the clinical research. Children’s active participation in the decision-making process is necessary not only in the daily clinical practice, but also and especially in all the activities related to the development and use of drugs. In the last years, the idea that children’s preferences should always be taken into consideration is agreed upon also among parents. For this reason, healthcare professionals have to consider children and families’ active participation as a fundamental step to reach consensus and compliance to treatments and research.
CVBF has been working for years to encourage the development of innovative products for the treatment of rare diseases and is involved in several clinical trials aimed to test new treatments for rare and paediatric diseases.
To encourage the patient engagement and patient empowerment, CVBF has promoted, in collaboration with the TEDDY Network (European Network of Excellence for Paediatric Clinical Research) the set-up of the first Italian and Albanian Young Person Advisory Groups, KIDS BARI (Italy) and KIDS Albania, in the framework of the International Children’s Advisory Network iCAN.
Both groups are composed of young patients and healthy youngers, that are being trained on health, medicine, research, and innovation to support researchers and to increase awareness of clinical research. For the Rare Disease day 2018, KIDS Bari and Albania youths will organize a meeting focused on rare diseases to give the kids the instruments to understand the importance of research in rare disease field and spread information on the rare disease day within the schools involved in the project.
The Rare Disease day is not just one day, but in the second half of February, many events will take place in all the countries involved. You can support the Rare Disease Day in many ways: becoming a friend, posting your event, telling your story, etc.
CVBF has supported this event by becoming a friend of Rare Disease Day and showing its support on its official website and social networks:
For further information visit the following website: https://www.rarediseaseday.org/