EMPOWERare-2021

About this project

<p style="text-align: justify"><span style="font-size: 11pt"><span style="font-family: Calibri, sans-serif">&nbsp;People with rare diseases continue to be off the radar of health and social support and they became even more vulnerable during the pandemic because their growing need of professional support has been neglected. EMPOWERare-2021 will help achieve permanent citizen involvement of people with rare diseases, some of whom come from disadvantaged geographical regions and groups, greater empowerment with the help of transferred Norwegian good practices and improved skills for upholding of rights and introducing the necessary reforms to make the issues more visible. To achieve empowerment and the specific goal, a mutual help network will be set up and end beneficiaries will have their capacity developed to participate in state policy setting and counselling. The project will help solve the above issue by training people with rare diseases to boost their capacity for civic involvement, creating referential materials with free access, transfer of good practices of support and empowerment services adapted to the local context, building a national network for mutual help of people with rare diseases, counselling by “patient assistants” on specific cases, building a virtual resource platform for sharing and consulting, strengthening the link between people with rare diseases and young people at a summer camp. In the short term, conditions will be created for “crisis” interventions through counselling, training and virtual mutual help groups. In the long term, partnerships will be created and local authorities and communities will be involved in solving issues and challenges important for people with rare diseases. Partnership with FRAMBU Norwegian resource centre will be key to transfer working practices and information to help the target group overcome their urgent issues. The contribution is two-way and durable partnership is based on common vision for building long-term models for active involvement and empowerment.</span></span></p>

Bilateral cooperation results

Added value of the project partner: Preparation of resource video materials for subsequent use, mentoring for the implementation of some of the activities and a memorandum of long-term partnership. Through EMPOWERare2021, several good practices were implemented to empower and support people living with rare diagnoses and their families, which proved to be working and effective. The creation of a wide network of interested parties on one hand created an opportunity for joint actions in the direction of advocating for the rights of those affected. On the other hand, the successful collaboration with the partners from the Frambu Resource Center creates prerequisites for future cooperation in the creation of a similar innovative service in Bulgaria as well. The information hotline and the resource platform with open access to a database that will potentially be used by 500,000 people in Bulgaria, and which can be updated and upgraded over time.

Project partners

• Frambu Resource Center for Rare Disorders Donor project partner· Norway