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Description
he pandemic confronted the Bulgarian Huntington Association (BHA) with the challenge of working remotely and exacerbated the condition of its target group. Lack of previous experience in working remotely and the severe social isolation of the families with Huntington’s disease placed the organization in a new reality in which it has to operate. The deteriorating mental health of people with chronic diseases as a result of the pandemic has been proved by a number of studies. Social isolation, exacerbated by the forced stay at home and interrupted treatment and rehabilitation, resulted in the urgent need of communication and sharing with specialists and people with a similar condition. The expected project results are as follows: a stronger CSO and thus a stronger civil sector and a vulnerable group that has been empowered and has recovered from the consequences of the COVID-19 crisis. The main project outcomes will be as follows: a team trained to hold online events, a training camp organized for the target group, a mutual help group set up, prepared Strategy for the development of the organization. The organization needs the project to continue working actively and recover from the consequences of the crisis. The project will help build capacity for holding online events and working remotely, improve the condition of the target group, that has deteriorated as a result of the pandemic, create a strategy for development in response to the COVID-19 crisis. The success indicators are fully implemented planned activities within the time frame and the frame of the approved budget and compliance with the requirements for publicity and visibility.
Summary of project results
The main goal of the project was to mitigate the negative effects of the COVID-19 pandemic and its related restrictive measures, by building internal capacity to operate effectively during crises and reducing the social exclusion experienced by families affected by Huntington''s disease.
Key Activities and Achievements
- Capacity-building training and expert consultations with project partners were conducted to enhance the knowledge and skills necessary for working with the target groups during the crisis.
- Despite the challenges of the pandemic, a live training camp – HD WEEK was successfully organized, providing participants with access to:
- Support groups
- Art therapy
- Medical consultations
- Rehabilitation sessions
- Self-help training
- Educational materials were developed and made freely available, equipping HD WEEK participants with self-help techniques and strategies for managing their condition at home.
- The project made a sustainable contribution by fostering stable partnerships with medical organizations and enhancing cross-sectoral collaboration with Bulgarian organizations working in the field of rare diseases.
A structured and effective approach for supporting families affected by Huntington’s disease in Bulgaria was established, laying the groundwork for future cooperation and enhanced intersectoral competence in the field of rare diseases.
Summary of bilateral results
Conduct training for internal capacity and exchange experience with partners on approaches to work with target groups in times of crisis.