The EmpoweRARE2021 Project

The EmpoweRARE project continues as EmpoweRARE2021

Bulgarian Huntington Association has started work on the implementation of a 2-year project "Empowerment of people with rare diseases - 2021", or EmpoweRARE2021, a continuation of the previous EmpoweRARE project.

SCOPE OF THE NEW PROJECT

EmpoweRARE2021 is again implemented in partnership with FRAMBU Resource Center for Rare Disorders.

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 main goal of the project is to train and empower representatives of the vulnerable group for civic participation and advocacy of these unmet needs. 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. This distinct continuation of the EmpoweRARE project will implement identified good practices and will build on the activities of the initial EmpoweRARE project and through the formation of a National Network for self-help of people with rare diseases.

The main activities of the project are:

  • 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.

 
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The EmpoweRARE2021 project is implemented with a financial support of € 106,300 provided by Iceland, Liechtenstein and Norway under the EEA Financial Mechanism. The main goal of the project is to achieve permanent civic activation of people with rare diseases through empowering activities to upgrade advocacy skills and improve the visibility of current issues of the vulnerable group.