Tashkent, Uzbekistan (UzDaily.uz) — On 10 October 2026, Tashkent hosted its first international public talk, titled “Changing the System, Changing Lives: Women in the World of Rare Diseases.”
The event brought together representatives from Uzbekistan, Russia, Singapore, India and Croatia.
Participants discussed the role of women in building systems of medical and social support for people living with rare diseases.
The meeting marked the fifth anniversary of the Genetic Dermatoses Department at the Republican Specialized Scientific and Practical Medical Center of Dermatovenereology and Cosmetology under Uzbekistan’s Ministry of Health.
It is the first department of its kind in Central Asia and was established on the initiative of Alena Yartseva (Kuratova), president of the Rare Women autonomous non-profit organization and founder of the Children-Butterflies and Kapalak Bolalar foundations.
Opening the discussion, Yartseva reviewed five years of work in Uzbekistan and emphasized the importance of international exchange of experience.
She said the development of the support system was already improving the quality of life of patients and their families, helping reduce social isolation, raise public awareness and expand opportunities for education and professional development.
“Uzbekistan’s five years of experience make it possible to assess the broad social impact of the system that has been established: changes in the quality of life of patients and families, reduced social isolation, greater public awareness, and expanded opportunities for education and professional development. But most importantly, we can see that this model works beyond the country’s borders,” Yartseva said.
She also stressed that cooperation with experts from other countries helps pool efforts to improve access to care for people with rare diseases. According to her, this work is becoming particularly important ahead of 2028, which was proposed at a recent restricted-format meeting of CIS leaders as the Year of Social Development in the Commonwealth.
The central theme of the public talk was the role of women in developing patient organizations and support systems.
Yartseva noted that in many families, women take primary responsibility for caring for a child with a rare diagnosis and later become catalysts for social change, establishing organizations and bringing families together. International cooperation, she added, enables them to exchange practical solutions and support one another.
Ritu Jain, vice president of DEBRA International and president of DEBRA Singapore, spoke about the development of patient organizations, from small mutual-support groups to participants in public and government decision-making processes.
Vlasta Zmazek, president of DEBRA Croatia, member of the DEBRA International Executive Committee and member of the RareResourceNet board of directors, shared the organization’s 30-year experience and highlighted the importance of international cooperation in building professional expertise.
Ratna Dua Puri, head and professor at the Institute of Medical Genetics and Genomics at Sir Ganga Ram Hospital in New Delhi, spoke about advances in genomic technologies, international practices in genetic diagnosis, physician training and the role of women in scientific research.
Guzal Jabbarova, chairperson of the Kapalak Bolalar foundation, presented Uzbekistan’s experience and described changes in the lives of patients and their families over the past five years.
She highlighted the contribution of specialists from the Dermatovenereology Center, who had worked in regions across the country and trained doctors. In particular, lectures by Akram Rakhmatov on epidermolysis bullosa helped inform the preparation of an information checklist for maternity hospitals, containing recommendations on first aid and subsequent referral to specialists.
According to Akram Rakhmatov, Doctor of Medical Sciences, professor and head of the research laboratory studying mycoses at the Republican Specialized Scientific and Practical Medical Center of Dermatovenereology and Cosmetology, the state participates in the diagnosis, financing of treatment and rehabilitation of patients.
Last year, the list of orphan diseases eligible for public funding was expanded to include 10 conditions, while funding increased 2.5-fold. In addition, molecular genetic testing and therapeutic nutrition began to be covered for certain forms of disease.
The discussion concluded with an examination of how to measure the effectiveness of support systems for people with rare diseases.
Participants considered whether the number of institutions and services established or the actual changes in patients’ lives should carry greater weight.
In their view, key indicators should include people’s ability to receive an education, work, start families and participate in public life regardless of their diagnosis.
On the same day, international experts visited the Genetic Dermatoses Department in Tashkent. They learned about the organization of medical care, diagnostic equipment, technical facilities and treatment rooms.
Doctors also demonstrated special hydrotherapy baths used for hydromassage, which helps reduce pain.
The department was established on the initiative of Alena Yartseva (Kuratova), founder of Uzbekistan’s Kapalak Bolalar foundation and Russia’s Children-Butterflies foundation.
The Children-Butterflies foundation participated in establishing the department, while Alisher Usmanov’s Art, Science and Sport charitable foundation fully financed its construction and technical equipment.
Efforts to develop patient care began in 2018, when a visit by leading Russian dermatologists to Uzbekistan laid the groundwork for a professional community working with epidermolysis bullosa. In 2020, the Kapalak Bolalar foundation was registered. It now provides systematic support to more than 600 patients.
Over five years, specialists from the Children-Butterflies foundation conducted around 1,000 home visits, while approximately 1,000 local doctors received professional training.
A unified patient database has been established in the country, and regular supplies of medical products have been organized for all regions. Specialists at the department provide care to more than 500 children annually, while the home-care service covers all 13 regions of Uzbekistan and the Republic of Karakalpakstan.
During the visit, Ritu Jain shared her own experience of working with patient organizations.
She said that discovering DEBRA after her daughter was diagnosed had helped her understand the importance of bringing together families affected by rare diseases.
Such organizations can provide mutual support while also helping drive legislative changes, influence government decisions and support scientific research.
The Rare Women autonomous non-profit organization brings together more than 1,000 members. It provides psychological support, promotes professional and career development, organizes further education, joint rehabilitation for mothers and children, medical consultations and specialized childcare services. In 2024, 11 charitable foundations and more than 500 new members joined the Rare Women 2.0 project.
The Kapalak Bolalar non-governmental non-profit organization supports children and adults in Uzbekistan with rare genetic skin diseases.
Its main areas of work include supporting patients with epidermolysis bullosa, various forms of ichthyosis and other rare genetic skin disorders, as well as developing systematic medical and social support.
