A week of epidermolysis bullosa is held in Uzbekistan
28/10/2021 18:25
A week of epidermolysis bullosa is held in Uzbekistan
28/10/2021 18:25
Tashkent, Uzbekistan (UzDaily.com) -- Every year in many countries of the world, the International week of epidermolysis bullosa, a rare genetic disease characterized by the formation of blisters and erosions on the skin and mucous membranes, is held. The Republic of Uzbekistan also actively participates in this event, which takes place from 25 to 31 October.
During its existence, the NGO Kapalak bolalar has done a lot of work to find, register and take care of people with epidermolysis bullosa and ichthyosis. Doctors of various specialties: a lawyer, a psychologist and social workers of NGOs regularly conduct consultations, provide medical, psychological, legal and social support, give out the necessary drugs and dressings free of charge, and send them for inpatient treatment.
Since the beginning of this year alone, the organization has conducted more than 560 consultations, 350 patronages, 78 rehabilitations and provided targeted assistance to 213 wards. The first in Central Asia department for the treatment of gene dermatoses was built and put into operation, which is designed for 24 places, when accommodated with an accompanying person.
“Measures have been taken to improve medical and social assistance to children with rare orphan diseases at the state level. By the decree of the President of the Republic of Uzbekistan, a program of state provision of medicines for people with rare orphan diseases was approved, which included 26 names of unique expensive dressings that are necessary for people suffering from epidermolysis bullosa like a second skin. In total, this year, within the framework of the decree, medicines worth more than 10 billion soums have been purchased from the state budget," – said a researcher, doctor of the NGO Kapalak bolalar Madamin Kholdarbekov.
Thanks to the active cooperation of the organization with the mass media and medical institutions of the Republic, these days more doctors of various specializations learn about epidermolysis bullosa. This will help them competently provide advice, taking into account the specifics of this disease. In cases of the birth of children with EB, maternity hospitals will be able to provide the necessary care and tell parents how and where to get the necessary help
Within the framework of Epidermolysis Bullosa Week, NGO Kapalak bolalar will send hundreds of boxes of medicines, special food and dressings to all regions of the country. They will be distributed to wards during consultations and patronages at regional dermatovenerologic dispensaries.
Our country will also be visited by a consultant doctor of the Russian Foundation "Children-Butterflies" Zinoviev Grigory Vladimirovich. He will hold a seminar "Squamous cell skin cancer in BE" for oncologists in Uzbekistan and Tajikistan and will take part in patronage work in one of the regions of the country.
“For the first time such an action took place in 2007 at the initiative of the international association DEBRA International. In the last week of October, associations and foundations around the world hold events and talk about the latest medical developments, methods of treatment, and collect help for people with epidermolysis bullosa. Each country has its own events, but they are all united by one goal - to draw the attention of society, doctors, journalists and the state to this rare disease. More than 120 countries participate, including Uzbekistan,” said Gulnoza Gafurova, director of the NGO Kapalak bolalar.
This week at the Tashkent Pediatric Medical Institute, a seminar of the leading specialist of Uzbekistan, the head of the scientific group for the study of gene dermatoses Akram Rakhmatov and the researcher of the Madamin Kholdarbekov is also planned.
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