Mother and Child Institute opens modernized clinic

The investment was financed with part of the funds from a targeted grant from the Ministry of Health with a total amount of PLN 19,560,500. The clinic is a leading unit in the country, specializing in the diagnosis, monitoring and treatment of genetically determined inborn defects of metabolism.

- Effective treatment of rare diseases is one of our priorities. To improve the situation of Polish patients and their families, we have adopted the Plan for Rare Diseases. We are creating an integrated healthcare model. We are also expanding reimbursement for new drugs and substances. The year 2023 may be the best year for reimbursement. In less than two months, we brought as many as 42 therapies into budget funding, including 19 in rare and ultra-rare diseases. There were also historic reimbursements in 2022: 115 therapies - 40 for oncology indications, 75 for non-oncology indications, including 37 in rare and ultra-rare diseases - Dr. Adam Niedzielski, Minister of Health.

- One of the most important elements in the care of a patient with a rare disease is the provision of rapid, highly specialized, properly targeted laboratory diagnostics, available both on an inpatient and outpatient basis. This is what the Rare Disease Plan serves. About 80 percent of rare diseases are genetic in nature and require advanced genetic diagnostics. Under the Rare Disease Plan, the National Health Fund will fund new genetic diagnostics. I would like to add that in 2022 we spent nearly PLN 180 million of the National Health Fund's budget on drugs for ultra-rare diseases," added National Health Fund President Filip Nowak.

Construction and finishing work at the clinic, which diagnoses and treats rare diseases - mainly rare metabolic defects among newborns, children and adolescents - was completed in February. They were fully financed by a targeted grant from the Ministry of Health for the task "Modernization of the Clinic of Inborn Metabolic Defects and Pediatrics and the Clinic of Child and Adolescent Neurology in Building B of the Institute of Mother and Child in Warsaw, at 17 A Kasprzaka Street, with replacement of the roof and purchase of equipment." The main sources of funding for investments at the Institute of Mother and Child are targeted grants from ministerial funds and funds that the hospital, which saves the health and lives of many young patients from all over Poland every year, actively obtains for projects from EU funds.

- I thank the Ministry of Health and the National Health Fund for their support. It's hard to think of a better day for good news than World Health Day, which is being celebrated today. I want to point out that every zloty we raise through various grants and subsidies allows us to better care for and take care of the health and lives of young patients, mothers and entire families. I am pleased that our doctors, nurses and nutritionists are raising the bar even higher in the diagnosis and treatment of genetic metabolic diseases. With this investment, as an Institute, we are helping them to take full advantage of the potential of scientific and research achievements and the opportunities offered by working in an environment of modern infrastructure," says Tomasz Maciejewski, MD, director of the Mother and Child Institute.

Thanks to a grant from the Ministry of Health, one of the few clinics in the country with such a profile, the technical infrastructure and hygienic and sanitary conditions have been significantly improved, bringing them up to current norms and standards.

- Taking care of the comfort of the youngest patients, their families and those who accompany them is an important part of all therapy. Today, thanks to an investment funded by the Ministry, we have patient rooms that have been adapted to accommodate a smaller number of patients, and we have also increased the number of sanitary rooms. And importantly, thanks to new mechanical ventilation systems, better, healthier air is breathed in the clinic," says Milena Kraszewska-Sulich, deputy director for administration and operations, Mother and Child Institute.

For years, the Mother and Child Institute has specialized in the diagnosis and treatment of genetically determined rare inborn metabolic defects. This ranges from diagnosis using highly specialized metabolic laboratory tests and the latest technologies in genomics and metabolomics to targeted therapies within the framework of personalized medicine.

- This investment is first and foremost an infrastructural development that will allow the areas of both Clinics, i.e. the Department of Congenital Metabolic Defects and Pediatrics and the Department of Child and Adolescent Neurology, to be enlarged in such a way that the multi-bed rooms, which until now did not allow for the effective use and functioning of both staff and patient care, will be comfortable to function in. This is another of the many investments that significantly improve the quality of the services provided at the Mother and Child Institute," said Undersecretary of State at the Ministry of Health, Marcin Martyniak.

The completed investment will improve the quality of the healthcare provided and allow better use of the hospital's potential, which annually performs more than 350,000 tests for 26 different inborn metabolic defects, including phenylketonuria, disorders of amino acid metabolism and fatty acid burning defects, at the Clinic under the nationwide Newborn Screening Program. The program covers all newborns born in Poland. At the Clinic, using highly specialized metabolic laboratory methods, tests are carried out to confirm suspected disease, optimal therapeutic management is determined, and patients are also diagnosed for several hundred other rare inborn defects of metabolism not identified in neonatal screening.

The Department of Inborn Defects of Metabolism and Pediatrics at the Mother and Child Institute belongs to the international European network of reference centers for rare inborn metabolic diseases (METABERN). The team led by Prof. Jolanta Sykut-Cegielska, national consultant in metabolic pediatrics, is renowned for its ability to combine the achievements of modern medicine with caring and long-term care, which is most often provided to patients with inborn metabolic defects aged 0 to 18 years. New diagnostic and therapeutic methods are being successively implemented at the Clinic; including innovative therapeutic technologies with the use of new medicinal products and agents for special nutritional use.

- At our Clinic, we have been caring for and treating patients in accordance with global standards for years. We diagnose ultra-rare diseases, and in cooperation with scientific centers around the world, we detect the pathomechanisms of inborn metabolic defects and implement often innovative therapies in a personalized way, that is, in a way that best suits the patient's health needs. The completed investment will help us better utilize the potential of the Clinic and our entire Team," says Professor Jolanta Sykut-Cegielska, Head of the Department of Inborn Metabolic Defects and Pediatrics.

The clinic actively cooperates with metabolic pediatrics centers in the country and around the world, and participates in international networks and registries. An important task is the ongoing scientific and educational activities on inborn metabolic defects. It is addressed not only to health care professionals, but also to patients themselves and their families. The clinic is also known for its active cooperation with patient associations.

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