TEDDY Network is pleased to support the Rare Disease Day 2018, that took place on February 28th, 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 in 2017.
Since Rare diseases affect children in more than 50% of cases, this is a huge priority of the TEDDY Network, that has been working for years supporting paediatric research for innovative drugs with special attention to the constraints affecting rare diseases patients.
A disease is defined as rare in Europe when it affects fewer than 1 out of 2000 and the 50% of rare disease affect children. The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. Moreover, for many of them there is not a 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 has been paid to the crucial role that patients play in research.
This is particularly important considering that children have the right to be involved and informed, to know in advance which medicines they need and why and to get access to the resulting evidence based medicinal products. Their point of view has to be taken into due account in the design and planning of a clinical study and they should be allowed to express their own views and granted the right to participate in the decision-making process concerning their own health.
In this context, the TEDDY Network has promoted, in collaboration with Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF), an innovative approach for the patients’ involvement in paediatric clinical research with theset-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 organized an educational meeting focused on rare diseases to give their peers the instruments to understand the importance of research in rare diseases 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 take place in all the countries involved. Every year you can support the Rare Disease Day in many ways: becoming a friend, posting your event, telling your story, etc.
TEDDY joined this event by becoming a friend of Rare Disease Day and showing its support on its official website and social networks.
Become a friend, as we did:
- https://www.rarediseaseday.org/friend/1567,
- https://www.rarediseaseday.org/friend/1569,
- https://www.rarediseaseday.org/friend/1570.
For further information visit the following website: https://www.rarediseaseday.org/