DEBRA International is delighted to welcome DEBRA Belarus as one of its newest member groups.
The Republican Public Association for Aid to Patients suffering from epidermolysis bullosa - DEBRA Belarus was created in Belarus in 2020, in April. Our association is a non-profit organization and its members do pro bono work. The association includes the patients suffering from EB, the parents of the children with EB, and those in our country supporting us. There are 116 people with EB in Belarus.
Our main goals are to:
provide mutual support and assistance to patients with EB and their families
engage the attention of medical professionals and the wider community to EB patients’ needs and problems, and to spread and raise awareness about EB in Belarus
pass on information and knowledge about EB and life with such a rare disease to share experiences, and maintain contacts within and outside of the country
provide information, and social and psychological assistance
promote the development and implementation of programs aimed at providing and improving the necessary assistance to patients with EB in Belarus
Celebrating New Year's (left) and Rare Disease Day 2021 (Right)
International Children’s Charity Foundation "CHANCE" has been providing great help to children with EB for many years. Through this collaboration a special program called "The assistance to the children with epidermolysis bullosa" was developed. The following projects were sponsored and realized:
the Republican office of genetic skin pathology, where patients with EB are registered and treated by a dermatologist, was established in the country
our patients have the possibility to carry out genetic tests in order to identify the form of EB
the training project for medical professionals was organized in special centers of EB in other countries
a brochure with medical recommendations on skin care and EB patients’ life features was developed and published
there has been constant material support for children with EB for the purchase of dressings and materials.
Our association cooperates actively with the Ministry of Health of the Republic of Belarus. Since 2020, our patients with EB receive state support to purchase dressings with a 90% discount as well as some wound care products for free.
We love life and know the price of help. We are very grateful to everyone who wants and is ready to help patients with EB. We hope that the circle of our friends will grow! We can be found on Instagram (@ludi_babochki.belarus) and on Facebook (@Ludi Babochki Belarus).
- Svetlana Romanchik (Chairwoman)
- Helen Makarevich (Board member)
The Republican Public Association for Aid to Patients suffering from epidermolysis bullosa - DEBRA Belarus EB Community
