28 February 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. A call to solidarity and to the acknowledgement of rare diseases as a real problem, not to be dismissed under the veil of indifference. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan “‘With research, possibilities are limitless”.
This year’s theme “Research” makes reference to and tries to bring to light and public appreciation the efforts made by rare disease patients, by their families and friends, recognizing the crucial role that patients play in research.
Research is key to bring hope to the millions of people living with a rare disease across the world and their families and is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.
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 poses.
Rare Disease Day doesn’t only 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. It is necessary to make aware the actors of the system, institutions, politicians, doctors, scientific community, pharmaceutical companies, healthcare and social professionals, in order to gather knowledge and resources to achieve results not only to discover new treatments, but also to improve the quality of life of patients and their families.
Rare Disease Day 2017 is therefore an opportunity 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.
The GAPP Project took part in this worldwide initiative thus by becoming a friend and a supporter of the Rare Disease Day.
For more information, please visit the official Rare Disease Day website.
