Financed by the MicroFund grant we could begin the POLKA project in Hungary. It is co-financed by the EU Public Health Program 2008-2013, DG Sanco. It is a 3-year project, between September 2008 and September 2011. The central idea of this project is to foster the opinion of patient representatives on future European policies for rare diseases, or to collect their views on existing ones. The POLKA project was the framework of our project coordinated by European Rare Diseases (EURORDIS) and aimed to create kits in 6 topics related to rare diseases in 27 country and 21 languages:
• Diagnosis, information of the patient, genetic counseling
• Neonatal screening
• Stem cell research
• Pre-implantation genetic diagnosis
• Centers of expertise
• Cross border healthcare
• Orphan drugs
Our main goals with this project were: activate and train our local activists and facilitate cooperation and collaboration between local actors and experts. Therefore we had several activities:
1. We organized a „breaking” workshop at 27th of March, 2010, where we have invited Anna Kole (EURORDIS) and Aliki Giannakopoulou (ECSITE) as speakers. This 6 hour long training gave the necessary information for our volunteers about international policy of rare diseases and POLKA project. After this workshop, we organized 6 other smaller one in a nice tea house, when they could get some specific background information about the topics and they also could try to use the kits and collect experiences together. These volunteers came from different regions of the country. Most of them are living in a hostel in Budapest as they are studying at universities. These volunteers are able to organize own sessions or we can mediate them for different events.
2. We organized sessions for special occasions. One for the representatives of the Hungarian Rare Diseases Organizations and other stakeholders at the EUROPLAN Conference in Budapest at 15-16 of October, 2010 and more at the patient organizations’ programs (camps and conferences). Meanwhile the children were trained and developed by specialists, the parents could calmly debating with our trained moderators. These special programs also made the possibility to reach our families from the countryside and decentralize our activities.
3. We made collaboration with the Youth of Excellences and they established a research group for rare diseases and involved us in their alternative lesson project in secondary schools.
To reach as many people as possible, we needed to organize the background administrative work (translation and adaptation of the kits, promoting activity, evaluating and so on). With the MicroFund we could cover this kind of our activity. For better organization and transparency we did an own homepage (http://sites.rirosz.hu/polka/), where you can see the results, and statistics, get information about our programs, and download the kits and the documents of the trainings. We had a volunteer who handled the common size and uploaded the results of the votes, and handled the pre-, and post evaluation forms. We made brochures and posters to promote our public events. For better economical financing, we established a “kit library” in our office, where all the kits are available free.
Our framework, the whole POLKA project will end at September 2011. We would like to continue our work at least till this deadline. It means that our final evaluation will be done on international level just after closing the project. The results of the evaluation will be used for creating the policies of European Union European Reference Networks for rare diseases. European Reference Networks for rare diseases gather specialized centers catering for a rare disease, or a group of rare diseases. By working together at the European level, they can support health care professionals in making the right diagnosis, in agreeing on standard of care, in accessing and generating information and knowledge on the disease. Their objective is the improvement of patient health outcomes.
To support and guide the implementation of the EU policy for European Reference Networks from the patients’ perspective, the project aims at involving patients and their representatives in its development.
1. We will disseminate a Declaration of common principles on Centres of Expertise and European Reference Networks for Rare Diseases
2. From these principles, a Charter of relations between patient organizations and reference networks will be tested in real practice
3. We will propose an evaluation of Reference Networks from the patients’ perspective, in close relation with the EU High Level Group and the EU-CERD.
Beside these our activities are continuously monitored and all of our results are uploaded on the www.playdecide.eu and we use some form to measure the sufficiency of our partners and the participants.
Up to the present, we could manage 229 polls in 6 topics and trained 12 volunteers to be able to coordinate these sessions by the help of MikroFund (8 months). The common interest is growing so we look forward optimistic in the future.