National strategy for rare diseases, how do we do now? That was the headline on Monday (2012-11-26) EUROPLAN conference at Scandic Anglais in Stockholm. Similar conferences are made in several locations in Europe to follow the development and influence the national plans now to be developed for rare diseases. The association has initiated the Swedish conference that focused on how to transform the strategy proposal made by tha Nationeal board of health and welfare now developed into a concrete plan of action to improve care for rare diseases. Health care providers, policy makers and user representatives from across the country signed up to take part in the discussion about how we are going to put the strategy into a concrete hand lens plane.
During the morning panel discussions, we take note of a number of important recordings. Among other things, they talked about the importance of financial resources to implement the Strategy. Both Lena Hallengren (S) Deputy Chairman of the Social Committee and Finn Bengtsson (m) a member of the social committee, said that it may be justified by government stimulus money to get state medical center for rare diseases in all health regions.
The afternoon was devoted to group discussions where participants had to immerse themselves in its different areas of focus. Under the heading definition, designation, information and training agreed group of participants that it is time for Sweden to adopt the European definition of a rare diagnosis (5 of 10 000 instead of 1 in 10 000) for us to be able to facilitate cooperation in Europe. The group discussed the influence of patient and user involvement was argued that it is important that the users can be involved from the beginning in the planning of the new medical centers, otherwise there is the risk that the planning is based on the providers’ interest and not the needs of patients.
User participation was also one of the topics on the union’s annual conference for chairpersons of national rare disease organisations that was held this weekend (24-25 Nov). 50 participants from our member associations met in Haninge outside Stockholm to network and learn about include how to become better at seeking funds. Since none of our member organizations are eligible for state club support is the issue of funding a recurring problem. To implement organization events and camps are often referred to private funds and foundations so that the business is dependent on one or a few persons time and dedication to seek funds. During a group discussion, participants discussed the question of how one should pursue the issue of better financial support for our compounds against makers. Many pointed out that diagnosis unions make a very important but unpaid job of educating both patients, families and caregivers about our diagnoses. It should therefore be in the interest of society to secure union survival by securing core funding activities. On sunday the whole group participated in a workshop aout the coming Europlan conference. The aim was fpr the participants to be trained in their ability to argue and have an opinion on several komplex topics and feel empowered in discussions with decision-makers and other important individuals and actors during the conference.
The Association remains now the important work of compiling the discussions of the Conference and Chair the meeting and communicate it to the Ministry of Social Affairs is now the strategy has on his table.
This is an English translation from the alliance’s blog: http://www.sallsyntadiagnoser.se/