Rare Diseases Day 2015: day-by-day, hand-in-hand
The photo is of 4-year-old Thaïs and her 6-year-old brother Matthieu from France hand in hand against their rare disease. They both have Hurler syndrome, a variant of mucopolysaccharidosis type 1 (Photo courtesy: EURORDIS photo competition)
Today officially marks the eight International Rare Disease Day, but events have been unfolding all week and all around the world. This years’ slogan – day-by-day, hand-in-hand - urges us to join hands and help each other towards achieving better health care, greater awareness and improved collaborations. There is not enough space to elaborate all of the activities being planned by patient organisations, scientific bodies, government representatives, members of industry, health professionals and others. Activities are unfolding across continents and 88 countries with many participating in the iconic show of hands. Several conferences and policy events have taken place across the world as a prologue to Rare Disease Day to build on successful partnerships and to foster the dynamic needed to work towards future goals.
Have you watched the inspiring official Rare Disease Day video!
The video was created with the help of UNIAMO, the Italian National Rare Disease Alliance, under the brilliant direction of Carlo Hintermann, animators Lulu Cancrini and Marco Varriale and all of their team, who volunteered their time to produce it. The participants Rita, Pietro and Beatrice who are each living with a rare disease, as well as their family members who accompanied them to filming the video represent the thought of many rare disease patients and their families and people are showing their love and appreciation in leaps and bounds as the video has garnered more than 40,000 likes.
OrphaNews International wishes you an eventful and productive day and thank all the groups that are making an effort to put rare diseases on the agenda of topics that merit awareness, action and funding.