Description
This project will yield an important contribution for the empowerment of the promoter, and similar organizations, in the promotion of equal opportunities and fair treatment to patients with rare diseases and their families, regarding, for example, the access to health care, education and employment services. The action plan will be divided into three components - awareness raising, data provision and training. Awareness raising actions will include the production of a testimonial documentary to be presented to schoolchildren, as well as setting up a photographic exhibition in a crowded public venue. The creation of an Information and Training Centre will provide a physical and virtual place - e-learning platform – for the promotion of training sessions and the sharing of information and materials, directed at diverse groups dealing with rare diseases, such as professional caregivers, patients, families and the general public. The project´s partnership includes public and private organizations of recognized standing in social action, training and rare disease matters, and the participation of a Norwegian counterpart NGO should also be highlighted.
Summary of project results
This project aimed to empower the promoter, which addresses the needs of patients with rare diseases and their families, regarding, for example, the access to health care, education and employment. Awareness raising actions amongst schoolchildren exceeded the number of planned participants, and included the production and subtitling of films and its presentation. As a result from this project, the Norwegian partner may now use these in Norwegian schools as well. Also, exhibitions were held, and working materials were shared with teachers. The project was an important learning opportunity for both organizations. In close cooperation with the Norwegian partner, an information and training centre was also created to provide a place for training and for storing of learning resources. Target groups include professional caregivers dealing with rare diseases, patients, families and the general public. 439 people received training during the project, also exceeding the target number.
Summary of bilateral results
The project activities allowed both Raríssimas and Frambu’s personnel to get to know a different context from their own. The technical and organizational make-up of the organisations, and the approaches used to address the same problem, differ in the two countries and it was possible to learn from the contacts made between the two organisations. Throughout the project, it was possible to involve some public entities both in Portugal and Norway, namely in work meetings. No Bilateral Cooperation Initiatives were carried out in connection to this project, although it was reported that bilateral cooperation already existed between these organisations, and future activities are envisaged. Both entities (promoter and partner) benefited from the project, as both were able to contact a sister organization and learn new methods that may be incorporated into their organizations. For the Portuguese promoter, sustainability was a guiding principle in the activities carried out under the scope of this project – it is expected that these activities become regular and financially sustainable, contributing to the growth of the organisation.