OVERVIEW

EmpoweRARE2021 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, a number of issues related to social support and care remain unresolved, concerning more than 400,000 people affected by various rare diseases. The distinct continuation of the EmpoweRARE project will implement identified good practices and will build on the activities of the first part and through the formation of a National Network for self-help of people with rare diseases.

PROJECT GOALS:

The main goal of the project is to train and empower representatives of the vulnerable group for civic participation and advocacy of these unmet needs.

HOW THE PROJECT WILL ACHIEVE ITS GOALS:

  • Implementation of trainings to support people with rare diseases and their families.

  • Creation of a telephone line to provide basic information to people with rare diseases and their families.

  • Establishment of a Virtual Resource Center their families.

  • Organizing a Camp for support of people with rare diseases and their families.

  • Establishment of a National Network for mutual assistance of people with rare diseases and their families.

VALUE ADDED BY FRAMBU AS THE PROJECT PARTNER:


The Norwegian partner organization is one of the first resource centers for rare diseases in Europe and its participation contributes with serious and long-term experience in empowering and supporting patients and families with rare diseases.

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.

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