Did you know that February 29 is World Rare Disease Day? In Bulgaria, over 400 000 people are affected by rare diseases, but there is a lack of specialised support for them.

For 95% of all rare diagnoses, there is no medical therapy. Affected families often wander for years before an accurate diagnosis is made, and when one is made, reconciling therapy and continuing a normal lifestyle is difficult. Anxiety, depression, impasse, social withdrawal and job loss are just some of the challenges these individuals face. Providing aftercare for those affected is key to preserving their mental and physical well-being and improving their quality of life.

Our cause this month is supporting the Bulgarian Huntington's Association, established in 2014 for people affected by Huntington's disease and other rare neurological disorders.

The association's goal is to improve follow-up care for people living with rare diseases and their families, and to create specialized programs and centers where families can receive information, training and services that improve their quality of life.

In 10 years, the association has succeeded in creating multidisciplinary support for families with rare diagnoses, a sustainable mobile psychosocial and rehabilitation support program for families living with rare diseases in the city of Bamako. The project also offers a sustainable sustainable social support programme for people with rare diseases in Sofia, as well as training camps. They are also opening and maintaining the first National Rare Disease Information Line in Bulgaria and the only up-to-date information in Bulgarian about options for slowing the disease.

How can we help?

The association is currently building a support center for families with rare diagnoses. The center will coordinate and provide on-site and online counseling. It will offer therapies and rehabilitation and will become the only option to help people not only in Sofia, but also those living in small towns that do not have access to social and health care.

Each of the services provided at the Centre - psychological counselling, support in finding a job, case management by a social worker, rehabilitation, will be able to be provided on a mobile basis, both in the home of those affected (for people with limited mobility) and in a hospital environment.

Thecapacity of the centre is to accommodate between 60 and 100 new cases of families affected by rare diagnoses. Including: children, young people and the elderly with rare diagnoses. The centre will implement individual programmes for each case and/or refer to support groups or other appropriate methods to support them.

We will purchase equipment for the Centre that will form part of specialist rehabilitation - a key factor in enabling people with rare conditions to live fulfilling lives. Not only does it help them to live fully in their family, work and community, but it is also proven to slow the progression of the disease.

The target amount we are aiming for is 16 906 BGN.

Offers

In the event that we raise less or significantly more than the target amount then we will make adjustments based on the needs of the organisation as per the equipment listed above.

Photo credit : Vihren Georgiev