April 24 - 25, 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, a scientific-practical conference “Actual issues of diagnosis and treatment of cystic fibrosis in children” will be held.

Kazakhstan Association of Cystic Fibrosis NGO "Children with disabilities, patients with cystic fibrosis," the World Organization for Cystic Fibrosis «Cystic Fibrosis Worldwide» (CFW - World Organization of cystic fibrosis, UK), the Ministry of Health and the Scientific Center of Pediatrics and Pediatric Surgery will hold a two-day training module for professionals pediatric service . The event will be attended by doctors from all regions of Kazakhstan, lung specialists, dieticians, gastroenterologists, regional coordinators for Rare (Orphan) Diseases and university students.

On June 21, 2016, the Board of Directors of the World Organization of Cystic Fibrosis CFW made a positive decision on joining the CFW Kazakhstan Association of Cystic Fibrosis, as well as on the support of Kazakhstan. The Association organized a visit by a team of the best specialists in the treatment of cystic fibrosis to train Kazakhstani doctors in international standards for the treatment of cystic fibrosis.

Training modules for cystic fibrosis in children hold highly skilled members of the team of experts of the World Organization for Cystic Fibrosis «Cystic Fibrosis Worldwide» Dr. Ian Balfour-Lynn Cystic Fybrosus Paediatrician (Pediatrician), Dr. Susan Linden Woods CF Dietitian (nutritionist), Ms Sunayana Ammaui Thorpebeeston CF Physiotherapist (physical therapist), Dr. Suzanne Kenny CF Nurse (nurse), as well as CFW President Mr. Terry Stewart.

Within two days (24-25 April), foreign experts will hold a workshop and share international experience of medical genetic diagnosis, treatment of genetic disease cystic fibrosis, with recommendations for nutrition and care of children with cystic fibrosis.

On April 26, foreign doctors of the World Organization for Cystic Fibrosis will visit the Scientific Center of Pediatrics and Pediatric Surgery, where they will meet with the parents and children of patients with this rare disease. During the meeting, a round table meeting will be held with the participation of the doctors of the SCPPS clinic, representatives of the Ministry of Health of the Republic of Kazakhstan and doctors of the city’s children's clinic No. 2, to discuss issues of genetic diagnosis, treatment and rehabilitation of patients with cystic fibrosis, clinical protocols, learning outcomes, therapy and drugs, questions kinesitherapy and rehabilitation of patients.

The conference is devoted to the problems of cystic fibrosis in children, whose treatment by the pathogenetic method is lifelong replacement therapy. The treatment of such patients is extremely expensive and in all developed countries of the world is provided with special State programs.

Background information: Cystic fibrosis - a serious genetic disorder that occurs in humans in the event that both parents are carriers of the gene. In this case, the probability of the birth of their healthy baby is only 25%, the patient Muko - 25% and a carrier of the defective gene is 50%.

Today, 105 patients with cystic fibrosis are officially registered in Kazakhstan. The purpose of this event is to increase the literacy of doctors of Kazakhstan in relation to cystic fibrosis, as well as to attract the attention of the medical community to the problem of cystic fibrosis.

Date: April 24-25, 2018;

Registration of participants: from 08:00 to 09:00 hours;

Conference start: 09.00 h .;

Venue: Almaty, conference room of the Almaty Hotel, at the address: 85 Kabanbay Batyr Street.

Press Service "Scientific Center of Pediatrics

and pediatric surgery "

8 (727) 269 69 52

Nazira Zhumakulova 8 707 815 18 33
Indira Izbasarova 8 701 757 98 92 / Kazakhstan cystic fibrosis association