Minutes of the CSH Council Meeting 25.8.2012

Last weekend, the Society's Council met for its regular session. The Council convened in Dolni Bojanovice with the following members present: Martin Bohun - Vice-Chairman, Petr Grim, Michal Skorepa, Jana Dvorackova. Chairman of CSH Vladimir Dolejs and Vaclav Toth excused themselves, both due to long-term health issues. The CSH Council has a quorum even with this number of attendees.

The following items were discussed:

The CSH Council discussed and approved that, due to the long-term health issues of CSH Chairman Vladimir Dolejs, the Vice-Chairman Martin Bohun will assume his duties.
The CSH Conference, in view of the EHC 2012 being held in Prague, will take place in the upcoming year 2013.
The Council commits to negotiating with Bayer the possibility of arranging continuous passive motion (CPM) devices for the public.
Given that CSH did not receive grants for publishing the Hemophilia Newsletter, CSH will publish the Newsletter during November 2012. The only one for the year 2012.
Petr Grim commits to preparing material for VZP (General Health Insurance Company) and the Ministry of Health with questions about the unclear functioning of UHKT (Institute of Hematology and Blood Transfusion) in 2012. A possible failure to conclude a contract for the new year would significantly affect patients with blood coagulation disorders. Information will be published on the Society's website.
A publication from the research "How hemophilia patients live in the Czech Republic" is being finalized in cooperation with Baxter. The publication should be available at the October hemophilia consortium and subsequently to all hemophilia treatment centers in the Czech Republic.
The Council discussed the Society's website, which should have the Discussion section modified and linked to articles.
A Society Facebook page was established, as well as a YouTube channel. We will regularly publish Society news and videos here. Links are placed at the bottom of the hemofilici.cz website.
Discussion of planned workshops. Due to the heavy workload and health indisposition of some Council members this year, CSH plans to hold only one more "Together about Hemophilia" workshop (November 2012) in South Bohemia.
The planned meeting of patients with von Willebrand disease is also getting underway through outreach to patients at individual hemophilia treatment centers.

Regarding the upcoming European Haemophilia Consortium (EHC) Congress in Prague, many activities need to be prepared and planned:

The EHC Congress will take place on October 26-28 at the Prague Marriott Hotel. Detailed information and the congress program can be found on the website www.ehc2012.eu
CSH is in constant contact with the Irish agency coordinating the preparations.
The CSH Council proposes arranging a photography exhibition "Every Face Has Its Story" featuring hemophilia patients in the Marriott Hotel foyer. Details will be discussed with Bayer.
Ensure promotion and subsequent media coverage of the EHC in Czech media.
Produce an English-language leaflet about CSH activities and its representation in the hemophilia community for the purposes of the EHC.
Secure materials for the planned CSH booth at the EHC in Prague - promotional (banners, etc.)
The program for the gala evening at the French Restaurant of the Municipal House is under negotiation, and we are processing proposals and options.
12 volunteers who are fluent in English need to be secured for the congress.

Thank you for your attention. CSH Council. Recorded by: Jana Dvorackova