{gallery}News_26.04.2018{/gallery}

On April 24 - 26, 2018 in Almaty within the framework of the Roadmap for the Introduction of New Standards for the Diagnosis and Treatment of Rare Diseases in Children in the Republic of Kazakhstan for 2017-2019, the scientific and practical conference "Actual Issues of Diagnosis and Treatment of Cystic Fibrosis in Children" was held.

The Kazakhstan PA (Public Association) of Cystic Fibrosis “Children-invalids with cystic fibrosis” , the Worldwide Organization for cystic fibrosis «Cystic Fibrosis Worldwide» (CFW), the Ministry of Health of the Republic of Kazakhstan and the Scientific Center for Pediatrics and Pediatric Surgery held a two-day training module for pediatricians. The conference was devoted to the problems of cystic fibrosis in children, whose treatment in all developed countries is provided by special state programs.

More than 120 doctors from all regions of the Republic of Kazakhstan, pulmonologists, dieticians, gastroenterologists, regional coordinators for rare (orphan) diseases and students of medical universities took part in the event.

On April 26, within the framework of the Scientific and Practical Conference, a round table was held with the participation of the Vice Minister of Health of the RK Lyazzat Aktaeva, specialists from Great Britain and the Czech Republic, jointly with SCPPS and City Children's Hospital № 2. Through a video-link, the Vice Minister thanked the guests for their assistance and support in resolving this issue. The round table discussed issues of medical genetic diagnosis, clinical protocols, provision of medicines and rehabilitation of patients, as well as the establishment of a center for cystic fibrosis in the Republic of Kazakhstan.

In turn, guests from the UK expressed their readiness to share their experience in the treatment of children with cystic fibrosis and to improve the skills of specialists.

“The World Organization for cystic fibrosis “Cystic Fibrosis Worldwide” is an international charitable organization registered in the state of Massachusetts, USA. The goal of the organization is to improve the quality and life expectancy of patients with cystic fibrosis in the world. 72 countries are members of the CFW, the main activity is the distribution of information about the disease among scientists, health workers, patients and their families, as well as supporting the establishment of centers for the treatment of cystic fibrosis. The organization was established in 2001. We provide assistance to such countries as Bosnia, Georgia, Palestine, India, Brazil, Armenia, Oman, Saudi Arabia, Latin America, etc. As we are a charitable organization, we are ready to provide all support and assistance, noted "the President of the World Organization for cystic fibrosis” Terry Stewart.

Qualified doctors from the UK also held a meeting with the parents of children with cystic fibrosis, answered their questions and made appropriate recommendations.

Let's remind: on June 21, 2016 at the Board of Directors of the World Organization of Cystic Fibrosis CFW, a positive decision was made to join the Kazakhstan association of cystic fibrosis in CFW members, as well as support of Kazakhstan. In this regard, CFW undertook to organize a working trip of the team of the best specialists in the treatment of cystic fibrosis for the training of Kazakhstan doctors to the world standards of treatment of cystic fibrosis. As part of the agreement, the world's best specialists from Great Britain's leading hospitals as - Great Ormond Street and Brompton's Royal Hospital - came: Ian Balfour-Lin, Susan Madge, Ammani Prasad, Susie Kenny, Milan Maciek and President of the World Organization of Cystic Fibrosis, Mr. Terry Stewart. This workshop is the first step of the CFW organization in support of the RK.

Foreign specialists for two days (in March this year) shared their experience on the world practice of cystic fibrosis treatment, including medical genetic diagnosis, treatment of pulmonary complications, physiotherapy and recommendations for proper nutrition and caring for children with cystic fibrosis.

In recent years, the Ministry of Health of the Republic of Kazakhstan has paid special attention to certain rare diseases, such as primary immunodeficiency diseases, cystic fibrosis, hereditary blood clotting disorders, Duchenne myopia. Since 2017, Kazakhstan has been implementing a roadmap for the introduction of new standards for diagnosing and treating rare diseases in children. Within its framework, clinical protocols for diagnosis and treatment are revised, patient routes are developed, diagnostics and therapy are improved. In each regional center, there have been identified coordinators for orphan diseases together with the republican center who provide medical care to patients with rare genetic diseases. Children diagnosed with cystic fibrosis provide the necessary drugs in the republican budget at the outpatient level and receive free inpatient treatment. Today 100 patients with cystic fibrosis have been officially registered in Kazakhstan. Every year, the diagnosis of the disease in Kazakhstan is improving.

For reference: Rare (orphan) diseases are chronic severe or life-threatening illnesses that can lead to disability, shorten life expectancy. For today more than 7000 kinds of rare diseases are known and constantly this list is updated. Most of them are genetic diseases, but among rare diseases there are diseases of an infectious, autoimmune or toxic nature. Unfortunately, the causes of many orthopedic diseases remain unknown. Symptoms of such diseases can occur both from the day of birth, and at a later age. Often remaining unrecognized, these diseases can occur under the masks of various severe conditions, and the overwhelming majority of them die under false diagnoses. In Kazakhstan, as well as in Russia, diseases with a prevalence which are considered rare, not more than 1 case per 10,000 people.

Scientific Center of Pediatrics and Pediatric Surgery of the Ministry of Health of the Republic of Kazakhstan

8 (727) 2696952