The “Rare Disease Day” campaign has reached its 10th edition this year, on February 28th, 2017, bringing once more, to public attention, the topic of rare diseases as a subject of medical, political and institutional concern. The initiative was founded by EURORDIS and its Council of National Alliances in 2008, triggering, ever since, a series of related events all around the globe, fastly turning from an European campaign to a world-renowned advocacy event that stands for dissolving ignorance and empowering collaboration for the better understanding and treatment of rare diseases. “Rare Disease Day” has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.
The theme of Rare Disease Day 2017 “Research” recognizes the crucial role of research to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
In particular, the Rare Disease Day 2017 slogan “With research, possibilities are limitless” appeals to a wider audience, to stress the key role of research in bringing hope to the millions of people living with a rare disease across the world and their families.
People living with a rare disease and their families are often isolated. To this aim, the wider community can help to bring them out of this isolation and Rare Disease Day will foster this process amplifying the voice of rare disease patients so that it is heard all over the world.
DEEP project welcomes this initiative and is pleased to contribute to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Due to the fragmentation of knowledge, it can take years before a patient affected by rare diseases get diagnosed.
DEEP considers the promotion and the coordination of Research extremely important for health care system, and particularly 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 raise awareness on haemoglobinopathies and make the voice of patients affected by thalassaemia and other haemoglobin disorders heard to a wider audience and highlight their needs to equal access to quality health care.
DEEP joins this event by becoming a friend of Rare Disease Day, showing its support on its official website and social networks.
For more info about the rare disease day, please visit http://www.rarediseaseday.org/