Rare Disease Day
Leading words for the Swedish Rare disease day campaign that takes place in real life as well as on the web, are as follows: • participation, • publicity • impact.
Through the commitment of our 11 000 members, chances are we will be successful in bringing the subject of “Rare diseases” to the head-lines on the 29th of February 2012. The kick-off of our campaign was recently held in Stockholm on 15-16 October. The participants were 45 strong chairmen and women of our member organisations. The main activities of the kick-off conference were about creating regional and national PR-plans. A part of our website has been created in order to promote grass-root involvement and participation. http://sallsyntadiagnoser.se/sallsyntadagen
“Hi, I am rare!” – photo exhibition
Jonas Forsberg, a professional photographer and also a rare disease patient, has taken 10 beautiful photographs of different persons and families and framed them in unique golden frames. On the backsides of the frames, the persons tell shortly about the experience of having a rare disease. The exhibition travelles along with the campaign’s different activities. The photos are also available in a digital version on the website. /sallsyntadagen/Fotoutstallning
“Rare Sweden!” – lecture-tour that prepares the regions
During the fall and winter 2011-2012, we are travelling to each of the seven university hospitals in Sweden (with the exception of three stops, which will be held during spring next year). Each stop has a programme based on the context of the specific local and regional conditions. These events are planned cooperatively with the hospital administration. The tour also goes to the Annual General Meeting of the Swedish Society of Medicine, where we will hold a seminar on 2 December. The aim of the tour is to establish contact between our organisation and the various units of the hospitals that are working with groups of rare disease patients.
“Rare Central!” – an event at the Central station of Stockholm
On 29 February, an event will be held in the big arrival hall of the Central station in Stockholm. This place has the largest daily number of visitors in all of the Nordic countries. Artists of different kinds and unique artistic presentations will make the day special, in a joyful manner, for people passing by. Volunteers will provide information about rare diseases and the importance of a national plan for these diseases, in order to reach the goals of equal care for everyone.
“Rare Sweden, the national perspective” conference and think tank
At the very same day, 29 February, a conference with think tanks will take place in Stockholm. The participants of the conference are mainly people with key positions in the political context. Representatives from the member organisations are also invited. Throughout the conference, the content of the national plan/strategy of rare diseases will be on the agenda, among other things that will be discussed in think tanks during the afternoon.
Mr Göran Hägglund, Swedish minister of Health and Social affairs will hand over “David Legas Scholarship” to a “young person who is a volunteer in a rare disease patient organisation and a source of inspiration in the rare disease context”. Members of the scholarship jury are:
• Mr David Lega himself,
• Ms Eva Hamilton, managing director of the Swedish Public Service Television,
• Mr Göran Hägglund, Swedish Minister of Health and Social affairs.
