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Rare — looking: Russia became the fourth in the rating of assistance to orphan families
Russia was among the leaders in the ranking of orphan patient system support and took the fourth place. The study was conducted among 33 countries from six regions of the world. It showed that Russia has developed financing and organization of treatment, but there remains a gap in comprehensive family support. What is the good of the Russian orphan patient care system, and what could be adopted in other countries — in the Izvestia article.
How the research was conducted
A comparative study of support systems for families with orphan patients, conducted by the Russian NGO Rare Women in collaboration with the Butterfly Children Foundation (available to Izvestia), covered 33 countries in six regions of the world: Europe, North America, Latin America, Asia, the Middle East and Africa.
The States for the analysis were selected based on the availability of information on orphan diseases in general or specifically rare skin diseases. These are mainly the participating countries of the Rare Women Forum, which opens on April 24 in Moscow.
The state policy in the field of rare diseases, financial and social support measures, medical infrastructure, the role of the non-profit sector and additional tools affecting the quality of family life were analyzed. Based on the collected data, an integral indicator was calculated that reflects the level of system security and support. The authors call the assessment of the integration of all measures into the family support system a key principle of the study, rather than the presence of individual measures on their own.
As a result, Russia came in fourth place in the ranking of 33 countries, but we can also say that it is among the four undisputed leaders. France has 84 points, Japan and Sweden have 83.2 points each, and Russia has 81.6 points. Australia, which is in fifth place, is far behind, scoring only 68 points.
Interestingly, according to the assessment of the state policy in the field of rare diseases, the Russian Federation is next to the countries that were significantly lower in the overall ranking: Italy is in eighth, Argentina is in 22nd, and Iran is in 24th place. The worst situation in Russia is with the assessment of additional support measures, which the authors of the study included educational, social, psychological support, labor preferences and tax benefits. In these areas, Russia was in the group from 17th to 27th place, but since the weight of this indicator turned out to be the lowest compared to all the others, this did not affect the position in the ranking.
At the same time, the focus of the study, as far as possible, was primarily directed at women: mothers who raise children with orphan diseases. The ANO "Rare Women" says: for a long time, the international practice of supporting patients with orphan diseases focused on diagnosis, treatment and provision of therapy, while the problems of the family and its sustainability remained on the sidelines.
— We have been building a system for diagnosis for a long time. But in reality, the system is based on a woman — on her resource, her ability to make decisions and withstand this burden every day," Alyona Yartseva (Kuratova), founder of the Rare Women NGO, told Izvestia.
According to her, even in countries with a developed medical system, the key burden remains within the family, and the woman becomes the coordinator of the entire system, a kind of "project manager of the diagnosis." At the same time, while caring for their child and his treatment, women lose from 3 to 10 years of work experience, many do not return to their previous employment.
How orphan patients are helped all over the world
The authors of the study concluded that care systems for patients with rare diseases differ not so much in the availability of individual measures as in the degree of their mutual connectivity.
There is a comprehensive model in which medicine, care, social and financial support are integrated through common decision-making mechanisms. There are existing patient registries, a legally established policy on orphan diseases, good patient routing, financial support for the family, taking into account the costs of care, social support, etc.
The authors of the study cite France as an example of such a model (first place in the ranking), which has a national database of rare diseases BNDMR, centralized patient records, data exchange between institutions and medical care planning. Another country operating under this model is the Netherlands (ranked 18th), which implements the Personal Budget mechanism (PGB). The family can use it for care, specialist consultations and the organization of social support, which ensures the flexibility of the entire care system.
And there is a fragmented model when there is no single route for the patient and family, but there are separate support measures. For example, in Brazil, there are genetic consultations and extensive neonatal screening, but the amount of payments does not cover treatment and care, and medical and social assistance are not integrated into a single route. In China, with well-developed registries, research and specialized centers, and an established system of insurance coverage for diseases, access to drugs and the amount of funding vary significantly by region.
In general, countries are already able to identify patients, but they have not yet learned how to guarantee sustainable access to therapy and medical care, says Alena Yartseva (Kuratova). Even with excellent tools in the form of neonatal screening, genetic diagnosis, and registries, access to treatment remains uneven and unrelated to full family support. It is not always possible to build a patient's route from diagnosis to stable therapy and a normal family life.
What is the situation in Russia?
Russia occupies an intermediate position, the authors of the study note. The country has effective tools for access to treatment: patient registries, a centralized mechanism for financing the treatment of children with severe and rare diseases — the Circle of Goodness Foundation, a high-cost nosology program, an expanded neonatal screening program, etc. The system is indeed one of the strongest in terms of organizing and financing treatment. However, according to the authors, so far Russia has not built a single outline of family support.
— There remains a fundamental systemic gap. Social support is most often linked to disability rather than the presence of a rare disease. There is no single mechanism for family support, medical and social assistance work separately. The family's expenses for care, loss of employment, logistics, coordination of treatment and psychological stress are not fully taken into account," explained Alyona Yartseva (Kuratova).
The Ministry of Health of the Russian Federation reported in a comment to Izvestia that Russia guarantees preferential provision of expensive medicines to patients with orphan diseases under the high-cost nosology program. Currently, 317.6 thousand people are on the WNR register, 175 thousand of them are people with orphan diseases. They are provided with medicines at the expense of the federal budget, regardless of age, presence or absence of disability. There are currently only 14 diseases in the VZN program.
The situation is different for children — every child with a pathology identified based on the results of neonatal screening for 40 rare diseases is transferred to the care of the Circle of Goodness Presidential Foundation. All children are provided with expensive medicines, medical products and technical rehabilitation equipment.
The main problems are in adult orphan patients, confirmed by the Chairman of the Board of the All—Russian Society of Orphan Diseases Irina Myasnikova. Not everyone receives preferential treatment under government programs and the required amount of treatment.
"According to a survey conducted by the BOE and the All-Russian Union of Patients, among 494 adult patients and 187 of their representatives from 73 regions, which we conducted in January—February 2026, no more than 21.4% of adult orphan patients receive comprehensive treatment and supervision from several specialists at once," she told Izvestia. — At the same time, it is absolutely necessary, since it allows for holistic health monitoring and timely response to emerging complications.
Access to life-saving therapy, rehabilitation and necessary social benefits opens up the status of a disabled person, but not everyone has it, the editorial interlocutor added. Graduates of the Circle of Goodness Foundation face this problem especially often. Due to receiving free therapy in childhood, they are in a so-called compensated state, and leaving the "Circle of Goodness" often interrupts this lifelong therapy, and this negates previously achieved results.
Another problem that Irina Myasnikova is talking about is that patients with orphan diseases often have to be diagnosed for a fee. A study of patient organizations showed that in their region, only 50% of respondents were able to receive specialized diagnostics in a public institution in 2024 and early 2025 for free.
There are also difficulties with social support for families and adults through medical and sanitary expertise, the Chairman of the Board of the BOE admitted. Adults are often assigned only a third disability group, which does not reflect the actual severity of the disease and does not provide the necessary level of support.
In recent years, serious steps have been taken in Russia in the development of the orphan patient care system, said Yuri Zhulev, co-chairman of the All-Russian Union of Patients. He calls the creation of the Circle of Goodness Foundation the key. However, in general, the expert considered the Russian aid system to be defragmented. Due to the fact that the drug supply is divided between different sources, unequal conditions for patients are formed.
Yuri Zhulev also confirmed the problem of the transition from a child's system to an adult one. Here, too, much depends on the region in which the patient is located: the financial possibilities of the subjects of the Russian Federation are different.
There is also a problem with social support in the country, the source added. Disability remains the "entry ticket" to the benefits system in Russia, although orphan patients have a lifelong need for expensive treatment and support.
The Ministry of Labor of the Russian Federation, in a response to Izvestia, stressed that social assistance and support are provided "not in connection with the presence of a diagnosis, but taking into account the life situation of each individual citizen or family." However, in fact, they confirmed that it is the establishment of disability that gives the right to social support — benefits, payments, technical means of rehabilitation, rehabilitation measures, etc.
If a person has a disability, there are really broad federal and regional support measures for them: a disability pension, guarantees for parents when caring for a child, compensation for housing and communal services or a CTP policy, labor guarantees for parents, a set of social services, and others.
What can be borrowed from other countries
Russia could consider the positive experience of other countries in helping families of patients with orphan diseases, said Alyona Yartseva (Kuratova). She called the existing system in Denmark, where a personal coordinator works with the family, who is appointed after diagnosis, one of the most applied practices. He guides the family along the entire route: from diagnosis to receiving therapy, helps to arrange all types of support, organizes interaction between doctors, social services and other institutions, helps to navigate the system.
"In the Russian model, it is a personal coordinator who could close the gap between medicine, social support and the daily life of the family," said the founder of the Rare Women NGO.
In a number of countries, the integration of medicine, social support and care is different. In France, in particular, the interaction of medical, research and management systems is built through a single data contour for patients with rare diseases. In addition to the already mentioned BNDMR database, the BaMaRa digital system operates there, where diagnoses, patient routes, treatment, condition dynamics, and related parameters are recorded. The information is available to different medical institutions, which allows you to see the patient's entire path and ensure continuity between diagnosis and treatment.
— The French model shows how the registry can be used not only for accounting, but also as a tool for coordinating the patient's route and making decisions. In Russian practice, a similar approach is partially implemented at the level of the non-profit sector, in particular, at the Butterfly Children Foundation," the Izvestia interlocutor added.
In her opinion, the practice of Japan is also interesting, where, in parallel with the law on measures for rare and incurable diseases, the registry of diseases, screening and genomic diagnostic programs, extensive family support measures are in place. For example, there are centers and programs that help parents stay employed, and corporate programs with shorter working hours and extended parental leave. This approach shows that a rare disease should be considered not only as a medical problem, but also as a social and family problem, concluded Alyona Yartseva (Kuratova).
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