Analysis results On November 1-2, 2024, the First Kazakhstan Conference on Autoimmune Diseases in the context of orphan pathology was organized by the University Medical Center and the Public Association “Pediatric Intestinal Health Protection”.
The opening ceremony of the international conference was attended by Yuriy Pya, Chairman of the Board of the University Medical Center, representatives of the Ministry of Health of the Republic of Kazakhstan, international and local experts. Doctors from Slovenia, Switzerland, Belarus, Russia, Vietnam, England, Kazakhstan, India, Japan and Uzbekistan presented reports on rare diseases.
“Orphan diseases differ in a way that, in addition to fighting the disease, we have to prove to society that such diseases exist. In fact, these are not rare diseases and for a patient with an orphan disease, this disease is not uncommon. High-quality treatment of these diseases requires a multidisciplinary approach and the participation of a team of experts. I wish everyone a productive conference today, the search for new goals and opportunities,” said Yuriy Pya, Chairman of the Board of the University Medical Center.
Orphan diseases are rare diseases that occur in children and adult patients. Currently, there are about 7 thousand rare types of diseases in the world. And in Kazakhstan, these diseases are registered in 1 case per 10 thousand people. In the country, more than 40 thousand people suffer from a rare disease, 80% of which are genetic in nature. The conference was an important step in integrating a systematic approach to solving the problems of orphan diseases and improving the quality of patients’ lives in Kazakhstan.
The event was attended by about 600 participants, who were introduced to reports in such areas as pediatrics, neurology, oncology, hematology, nephrology, rheumatology, allergology, immunology, gastroenterology, endocrinology, genetics, cardiology, somatics and urology. Since patients with a rare disease need special care, particular attention was attributed to the nursing section at the conference.
To note, on June 1, 2024, the Republican Center for Orphan Diseases (RCOD) started operating on the basis of the University Medical Center, which became a coordinating center for the diagnosis, treatment and evaluation of long-term treatment results for rare diseases. The main goal of the center is to improve medical care and the quality of life of patients with rare diseases.
The general partners of the event were AstraZeneca, Novartis Pharma Service, Takeda Kazakhstan LLP; official partners were Biomarin, Pfizer, Acino, Swixx Biopharma LLP, Johnson&Johnson, Ipsen, Karaganda Pharmaceutical Complex LLP.
