Pictured from left: Professor Jochen Peters, Maria Kalinina, mother of a CCHS patient and Dr Martin Samuels
Consultant Respiratory Paediatrician Dr Martin Samuels visited Russia recently to talk to Russian doctors and families about the rare breathing condition Congenital Central Hypoventilation Syndrome (CCHS). UHNM clinicians have particular expertise in managing the condition, which is a rare inherited disorder of the body's automatic nervous system.
Dr Samuels and Dr Ajit Thomas, Consultant Respiratory Physician at UHNM, look after children and adults with the condition from a wide area of the UK. In Russia, only 20 cases are known about, but experts estimate that there are likely to be around 200. Dr Samuels gave a series of lectures in Saratov, Russia, alongside Professor Jochen Peters from Munich Children's Hospital. This was followed by a Q&A session and consultations with families. Russian clinicians are learning about how the condition is managed.
Dr Martin Samuels said: "I am part of the EU Network for CCHS and we are keen to see patients in other countries benefit from our united expertise. For rare conditions, virtual networks can work really well to help families and young adults and it was great to see parents of affected children help to organise this symposium."