International Conference “Rare Diseases – from Awareness to Action”
From February 27 to March 1, 2025, the Republican Conference with international participation “Rare Diseases – from awareness to Action” was held at the Nazarbayev University. The organizers were the University Medical Center, the Republican Orphan Diseases Center and the Association for the Care of Patients with Orphan Diseases in the Republic of Kazakhstan.
The purpose of the conference was to raise awareness about rare diseases, share knowledge and experience among specialists, scientists, doctors, patients and representatives of pharmaceutical companies, gain scientific experience and practical skills in areas such as hereditary diseases, new technologies in the diagnosis and treatment of orphan and genetic diseases, palliative care and rehabilitation, and improve the provision of patient care, management of pregnant women and children with orphan diseases.
8 sections covering key areas of medicine were held during the event: rheumatology, allergology, nephrology, gastroenterology, neurology, endocrinology, genetics, obstetrics and gynecology, oncology, hematology, pulmonology, nursing, rehabilitation and palliative care.
The conference was attended by about 700 specialists from Kazakhstan, Iran, Turkey, Korea, Uzbekistan, Great Britain, USA, France, Russia and Belarus. The participants exchanged experiences, studied advanced methods and technologies, and discussed issues of professional development for medical professionals.
Also, for the first time in Kazakhstan, the “Day of Patient Organizations” was organized. It is a unique platform for the exchange of experience, discussion of pressing problems of patients with rare diseases and interaction with medical specialists. More than 150 participants – patients, their relatives, representatives of NGOs and the medical community – discussed ways to improve the quality of life of people with orphan diseases. The Day of Patient Organizations has become an important step in strengthening cooperation and finding effective solutions.
We express gratitude for their contributions to the development of medicine to the general partners of the conference PTC Therapeutics, NOVARTIS, Takeda, AstraZeneca, BioMarin, and Johnson & Johnson, to the silver sponsors Pharm and Access, Pfizer and to the bronze partners Boehringer Ingelheim, DIAVERUM, Karaganda Pharmaceutical Complex, Recordati, and IPSEN. This large-scale event within the framework of the International Day of Rare Diseases has become an important platform for the dissemination of knowledge and the exchange of best medical practices.
