Minutes of the CSH Council Meeting 13.10.2013

The CSH Council discussed the following items:

1. Vladimir Dolejs 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 hosted by Belgrade.
2. CSH will propose to the EHC to organize a round table on the topic of children's camps with the perspective of exchange camps between member countries. Martin Bohun and Jana Kalabova will prepare the proposal.
3. The Council tasked the Chairman to contact the director of Brno University Hospital again and remind him of the unfulfilled promise to resolve orthopedic care at the CCC Brno. He also failed to fulfill his 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 Hemophilia Program (CNHP), as it is not fulfilling its obligations. Under the current conditions, it is impossible to arrange major orthopedic surgeries for patients from Moravia; its tasks are being carried out at the expense of CCC Prague. The Council expresses strong concern about the situation in Brno and CSH will demand that CCC Brno comply with the CNHP principles, or that the center be relocated elsewhere.
5. The Council tasks the Chairman to write a letter of disagreement to the VZP (General Health Insurance Company) director regarding the published ranking of the most expensive patients in the Czech Republic.
6. The "We Are Here for You" meeting will take place on November 9-10 at Hotel Jezerka in Sec. Martin Bohun presented the program proposal, which the Council approved and recommended also inviting a representative of the Repromedia company to inform about preimplantation genetic possibilities.
7. The CSH Council supports the involvement of psychologists in prevention and treatment and included a lecture from this field in the program of the Sec meeting.
8. The Chairman informed that the 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 Hemophilia Day in spring 2014.
10. The Council tentatively plans the celebrations for April 19, 2014. Council members submitted numerous program proposals, with the greatest support for a meeting on one of the South Bohemian narrow-gauge railways. Jana Kalabova will explore the options, and Vladimir Dolejs will approach sponsors.
11. The Council acknowledges organizational errors during the annual September Conference in Vraz and agreed on specific improvements.
12. The Council will arrange a translation of the European guidelines for diagnosis and treatment, send it to hemophilia treatment centers and healthcare regulators, and post it on the CSH website.
13. Martin Bohun proposed satisfying the demand of some CSH members for a seaside stay. The Council will conduct a preliminary survey and present the offer at the meeting in Sec.
14. The next workshop "Together about Hemophilia" will take place in autumn 2014 in the Moravian-Silesian Region.
15. Martin Bohun proposed organizing a Society ball following the example of Slovak colleagues. The Council did not adopt a final decision.
16. The Council decided to publish one more issue of the Newsletter before the end of the year and set the text deadline for November 11, 2013.

Recorded by: Jana Kalabova