Bulgarian society of the patients with pulmonary hypertension
Very few people know that the average time to diagnose a rare disease worldwide is about 5 years. These are years of research, ambiguity, symptomatic treatment and excruciating anxiety for the person suffering from a rare disease. Meanwhile, patients are exposed in their symptomatic treatment to the risks of medical errors and severe side effects. About 20-30 children and adolescents with diabetes out of 1000 registered cases aged 18 years or under may have established monogenic diabetes in BG.
Scope of the project: Plovdiv, the region of Southern Bulgaria (Rodopi municipality) and Lovech.
The patients living in this regions (Rodopi and Lovech) do not have access to highly specialized hospitals and have to travel to a large cities to be treated. Some of them belong to a specific minority group and sometimes their religious influences the decision to receive therapy and treatment.
In Bulgaria, people diagnosed with rare type of diabetes suffer from a lack of empowerment due to their lack of information, lack of treatment and follow-up care. Social services specialized according to the needs of people with rare diseases are completely lacking. Rare type of diabetes is not part of any national or local strategy for the development of social services or long-term care.
The project will contribute to solving the problems of people with rare forms of diabetes by increasing the capacity of these people for civic activity, creating training and information materials, transfer of information on good practices of social services from Croatia, proposals to institutions in the direction of improving and reforming social services and policies, identified "lessons learned".
The target groups of the project are: main - public institutions, end users - people with disabilities (except for mental disabilities). The direct beneficiaries are people with rare forms of diabetes, including representatives of minorities and public institutions with responsibilities in the field of social policy and services.
Empowering people with rare forms of diabetes through training and medical research. This main activity of the project will be implemented in 3 stages:
1. Consumer needs study: will prioritize empowerment training topics;
2. Empowerment through training (offline and online): introduction to good practices from Bulgaria and Croatia - 3 training seminars (Plovdiv, Lovech and Devin) with participants from all over the country;
3.Μedical research and preparation of a register of patients with rare forms of diabetes.
Upon successful implementation of the activity, the expected result is the achievement of empowerment and activation for civic participation of end users. To achieve this goal, the following intermediate results will be achieved: report of a study of the needs of end users; training materials and collection of good practices; conducting 3 training's; implementation of an advocacy media campaign to actually cover the needs of consumers for information of institutions and the general public.
For the first time, experience and good practice will be shared at EU level and patient organizations for rare diseases. The establishment of a Bulgaria-Croatia partnership in the field of rare forms of diabetes will show how important it is to work for the empowerment of patients with rare disease.
This is the first project within Bulgaria that focuses on the problems of children and young people affected by rare forms of diabetes. The empowerment of these patients is of particular importance.The implementation of the project we will make in close cooperation with a scientific team of endocrinologists ( Medical University-Sofia).
Funding requested from Civic Europe
1. Administrative costs - 2 200 EUR
2. Personnel costs - 15 650 EUR
3.Travel and accommodation - 7 000 EUR
4. PR - 5 500 EUR
5. Print materials - 3 500 EUR
6.Medical research - 16 000 EUR
*Empowering other groups
*Project for the Civil community