March 1, 2019: Timed to coincide with the Rare Disease Day, a national academic and practical conference «Cystic Fibrosis: Yesterday, Today, Tomorrow» was held in Kazan.
The event was organized in two formats: with live attendance in a conference hall and via a video broadcast, allowing to ask online speakers questions remotely.
Among the participants were pulmonologists, pediatricians, therapists, geneticists, bacteriologists, kinesitherapists, patients with cystic fibrosis and their parents; in total, 72 people plus 21 online professionals were in attendance.
During the event, the following issues were raised:
- Current state of assistance to patients with cystic fibrosis
- Transplantation: decision making for patients and physicians
- Psychological support for children on long-term treatment at the Children’s Republican Clinical Hospital
Earlier at the Children’s Republican Clinical Hospital, consultations for patients with cystic fibrosis were provided by physicians from the State Research Centre for Medical Genetics.
In total, more than 20 patients were consulted, while their blood samples were taken for genetic testing.