The “Rare Disease Day” campaign, this year at its 8th edition, is becoming more and more persuading and widespread, by promoting communication among hospitals, clinical centres, physicians and patients altogether for the purpose of a better understanding and treatment of rare diseases.
What started off as an European event, first launched by EURORDIS and its Council of National Alliances in 2008 with USA joining in 2009, is now a worldwide “mobilization”, inspiring thousands of other related events on a global scale.
The theme of Rare Disease Day 2015 is “Living with a rare disease” – paying tribute to the millions of people whose lives are affected by a rare disease and also to their families, friends and loved ones, who stand by them and support them every step of the way. Indeed, the slogan Day-by-day, hand-in-hand of the Official Rare Disease Day 2015 Video evokes the solidarity between families, patient organisations and communities.
DEEP welcomes and meets the concepts of this campaign by becoming a friend of Rare Disease Day and showing its support on its official website. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care to people living with thalassaemia and to push the boarders of research slightly further from its already encouraging progresses.