Minutes of the CSH Council Meeting 13.10.2013

The CSH Council discussed the following items:

1. Vladimír Dolejš reported on the EHC conference in Bucharest. The main topics were extended half-life products and gene therapy. Speakers warned against excessive optimism. In 2015, the conference will be organised by Belgrade.
2. CSH will propose to EHC the organisation of a round table on the topic of children's camps with the prospect of exchange camps between member countries. Martin Bohůn and Jana Kalábová will prepare the proposal.
3. The Council instructed the chairman to contact the director of University Hospital Brno again and remind him of the unfulfilled promise to resolve orthopaedic care at the CCC Brno. He also failed to fulfil the promise to convene a meeting on this topic at the Ministry of Health.
4. CSH representatives will raise the issue of the non-functioning CCC Brno at the next meeting of the Czech National Haemophilia Programme (CNHP), as it is not fulfilling its duties. Under the current situation, it is impossible to arrange major orthopaedic operations for clients from Moravia; its tasks are being performed at the expense of CCC Prague. The Council expresses strong concern about the situation in Brno, and CSH will demand that CCC Brno fulfil the principles of the CNHP, or alternatively that it be relocated elsewhere.
5. The Council instructs the chairman to write a letter of disagreement to the director of VZP (General Health Insurance Company) regarding the published ranking of the most expensive patients in the Czech Republic.
6. On 9 and 10 November, the meeting "We are here for you" will take place at the Jezerka Hotel in Seč. Martin Bohůn presented a draft programme; the Council approved it and recommended inviting a representative of the Repromedia company to inform about the possibilities of preimplantation genetics.
7. The CSH Council supports the involvement of psychologists in prevention and treatment and included a lecture from this field in the programme of the Seč meeting.
8. The chairman informed that applications for Ministry of Health grants were duly submitted.
9. The Council decided to award the CSH Annual Award for 2013 on the occasion of World Haemophilia Day in spring 2014.
10. The Council is tentatively planning the celebrations for 19 April 2014. Council members put forward a number of programme proposals; the most popular is a meeting on one of the South Bohemian narrow-gauge railways. Jana Kalábová will investigate the possibilities; Vladimír Dolejš will approach sponsors.
11. The Council is aware of organisational shortcomings during the annual September Conference in Vráž and agreed on specific improvements.
12. The Council will arrange for the translation of European guidelines for diagnosis and treatment, will send them to haemophilia centres and healthcare regulators, and will publish them on the CSH website.
13. Martin Bohůn proposed addressing the demand of some CSH members for a seaside holiday. The Council will conduct a preliminary survey and present the offer at the Seč meeting.
14. The next "Together about Haemophilia" workshop will take place in autumn 2014 in the Moravian-Silesian Region.
15. Martin Bohůn proposed organising an association ball following the example of Slovak colleagues. The Council did not reach a final decision.
16. The Council decided to publish one more issue of the Newsletter before the end of the year and set the editorial deadline for texts to 11 November 2013.

Recorded by: Jana Kalábová