Minutes of the CSH Council Meeting 25.8.2012

ČSH

Last weekend, the association Council met for its regular session. The Council convened in Dolní Bojanovice with the following members present: Martin Bohůn – Vice-Chairman, Petr Grim, Michal Skořepa, Jana Dvořáčková. CSH Chairman Vladimír Dolejš and Václav Tóth sent their apologies, 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 Vladimír Dolejš, Vice-Chairman Martin Bohůn will assume his duties.
The CSH Conference will be postponed until the coming year 2013 due to the organisation of EHC 2012 in Prague.
The Council commits to negotiating with the Bayer company the possibility of facilitating continuous passive motion (CPM) devices for the public.
Given the grants that CSH did not receive for publishing the Haemophilia Newsletter, CSH will publish the newsletter during November 2012. The only issue for 2012.
Petr Grim commits to preparing materials for VZP (General Health Insurance Company) and the Ministry of Health with an inquiry about the unclear functioning of UHKT (Institute of Haematology and Blood Transfusion) in 2012. A possible non-renewal of the contract for the new year would significantly affect patients with blood clotting disorders as well. Information will be published on the association website.
The publication from the research "How haemophilia patients live in the Czech Republic" is in the final stages of completion with Baxter. The publication should be available at the October haemophilia consortium and subsequently at all haemophilia centres in the Czech Republic.
The Council discussed the association website, where the Discussion section needs to be modified and linked to articles.
An association Facebook page was created, as well as a YouTube channel. Here we will regularly publish association news and videos. Links are placed at the bottom of the hemofilici.cz website.
Discussion of planned workshops. Due to heavy workloads and health indisposition of some Council members this year, CSH plans to hold only one more "Together about Haemophilia" 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 haemophilia centres.

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

The EHC will take place from 26–28 October at the Prague Marriott Hotel. Detailed information and the consortium programme can be found at www.ehc2012.eu
CSH is in constant contact with the Irish agency coordinating the preparations.
The CSH Council proposes organising a photo exhibition of haemophilia patients "Every Face Has Its Story" in the foyer of the Marriott Hotel. Details will be discussed with Bayer.
Ensure promotion and subsequent media coverage of the EHC in Czech media.
Publish an English-language leaflet about CSH activities and its representation in the haemophilia community for the purposes of the EHC.
Secure materials for the planned CSH stand at the EHC in Prague – promotional items (banners, etc.)
The programme for the gala evening at the French Restaurant of the Municipal House is being negotiated and we are working on proposals and options.
For the purposes of the consortium, it is necessary to secure 12 volunteers who are fluent in English.

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