OVERVIEW

EmpoweRARE project

Below we offer a brief overview of what motivated us to create this project and the reasoning behind using the EEA Grants and a Norwegian project partner to ensure its success.

THE FACTS:

In Bulgaria, people diagnosed with rare diseases suffer from lack of empowerment due to poor access to information, lack of treatment and follow-up care.

There are no national social services targeting the needs of people with rare diseases. Furthermore, rare diseases are not part of any national or local strategy for developing social services or long-term care.

PROJECT GOALS:

The aim of the EmpoweRARE project is to contribute to reducing the social disparity in Bulgaria by empowering a vulnerable group of people to participate in civil society, to initiate social policy reforms and to strengthen bilateral relations between donor countries and beneficiary countries.

EmpoweRARE will help people with rare diseases achieve civic engagement and to formulate, based on their experience and needs, recommendations for desired national reforms and development of new services.

HOW THE PROJECT WILL ACHIEVE ITS GOALS:


The project will contribute to addressing these issues by increasing the capacity of people with rare diseases for civic engagement; through the creation of training and information materials, suitable for multiplying the effect of training for other vulnerable groups.

 

Through transfer of information on good practices of social services from donor countries; by helping users formulate proposals to institutions towards improving and reforming social services; and by identifying the 'lessons learned' from this project.

 

VALUE ADDED BY FRAMBU AS THE PROJECT PARTNER:


The expected outcome of the partnership is to familiarize Bulgaria with the experience and best practices of the project partner, which has many years of experience in effective service models and experience in empowering people with rare diseases.

In order to achieve the desired project results, it is necessary to work with a partner who has the expertise to not only propose the introduction of new specialized services for the target group, which are currently missing in Bulgaria, but which is also capable of assessing the efficiency and effectiveness of the proposed services.

 

The partnership will help to achieve the goals of the project, thanks to the experience of the FRAMBU team and their knowledge of what works in the process of empowering a vulnerable group. This will save time, effort and money when we take advantage of the lessons learned in Norway.

 

In addition to the direct contribution of the partnership to the implementation of the project, we expect to achieve sustainable effects by making the cooperation between our respective organisations permanent. Working together on the topic creates an opportunity for long-term partnerships, sharing of knowledge, experience and initiation of new events for the benefit of the target group.

 

Establishing a lasting partnership will contribute to broader cooperation in the rare diseases sector, where Bulgaria is still lagging behind in the health and social services offered.

This document was created with the financial support of the Active Citizens Fund in Bulgaria under the Financial Mechanism of the European Economic Area.

The sole responsibility for the content of the document lies with the Bulgarian Huntington Association and under no circumstances can it be assumed that this document reflects the official opinion of the Financial Mechanism of the European Economic Area and the Operator of the Active Citizens Fund in Bulgaria.