Another Step Towards the Goal

ČSH

On Friday, another meeting of the Coordination Council of the Czech National Haemophilia Programme took place in Prague. It moved things forward once again. The main agenda item was the presentation of certificates to all centres that successfully passed audits. Essentially, all centres that applied received them, with the exception of Usti nad Labem for adults. In northern Bohemia, the situation will be that adults will find their HTC in Liberec and children in Usti. Nothing fundamental changes at other locations across the country.

A very extensive and heated discussion took place around the establishment of the definitive Coordination Council. The Czech Hemophilia Society defended its position as a full member with voting rights. The Coordination Council will consist of representatives of four CCCs, all HTCs, PSPs in Plzen and Pelhrimov, one CSH representative, and one IBA representative — i.e. the processor of electronic programmes of the CNHP. If you are not sure what CCC and HTC stand for, you will find an explanation in the list of centres in the website header. Representatives of all other workplaces dealing with haemophilia and von Willebrand disease may also attend Coordination Council meetings, but without voting rights.

In addition to the Coordination Council, a very small five-member Executive Council will be formed. Its composition was not fully decided, but it should include representatives of the four CCCs and one representing all HTCs. The Executive Council will then select two coordinators from among its members to represent the CNHP externally. The two outgoing coordinators, Miroslav Penka and Peter Salaj, stepped down from the position.

The most important document is the CNHP Declaration, which contains everything that fundamentally concerns every haemophilia patient. It can be viewed on the official website https://cnhp.registry.cz/. If any Society member feels that their centre is not acting in accordance with these principles, they can contact one of the CNHP bodies through the CSH Council.