Half a million people in Bulgaria live with rare diagnoses, without access to specialized social support. In Sofia alone, they are 150,000 thousand.
Each one of them has been: Overwhelmed by the rare diagnosis, devastated by the prognosis, crushed by the risk to their children, helpless in their loneliness and terror.
Anna too. She is a wonderful young woman, mother, wife, professional. Her life moves in the rhythm of a beautiful and harmonious dance until Huntington's Disease suddenly strikes and begins to inexorably twist her steps.
At first, Anna plunges into denial and refuses to accept the diagnosis and prognosis, then sinks into the deep abyss of grief and despair. If the inability to manage her life and take care of her family scares her, the possibility that her children will also have the disease paralyzes her with terror.
Huntington's Disease is classified as a rare genetic neurodegenerative disease. This means that children with an affected parent have a 50% chance of inheriting the genetic defect that causes the disease.
However, Anna is not alone in her struggle with fear and the unknown. Her husband managed to convince her to join the rehabilitation and support programs organized by the “Bulgarian Huntington Association”. After the first visits, Anna and her family feel calmer and more confident. They have acquired the strongest resources for the road ahead, and most importantly, they are not alone:
"Now we all feel much better and know what and how we need to act, to be able to maintain her condition. I am certain that if such centers are created and supported by people, companies and institutions it will have a positive effect on our society as a whole, not just for families living with a rare disease."
For 9 years in only 25 square metersFor 9 years, in only 25 square meters, 1295 people have been supported, with more than 107 different rare diagnoses. 1295 човека, с повече от 107 различни редки диагнози.
Awareness, support, training, social and psychological assistance, physiotherapy, consultations, free information telephone line. This is a small part of the spectrum of services that the “Bulgarian Huntington Association” provides to people with rare diseases and their families. In a working room of 25 square meters, 7 specialists and 20 volunteers manage to support more than 100 families and provide more than 700 consultations every year. Behind the numbers are people like Anna, who, thanks to this support, manage to replace fear with bravery, the unknown with knowledge, and the feeling of loneliness with new friends.
However, almost half a million people do not have Anna's privilege. They and their families are isolated, scared and lost in the cruel maze of the unknown and helplessness. To guarantee them a good, fulfilling and productive life, so that no one feels alone in their journey, so that support is not a privilege, but a fundamental human right, we build:
The only center in Bulgaria to support families with rare diagnoses.
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