Minutes of the CSH Council Meeting in Prague

Council members discussed:

1) Preparation for the Pfizer summit The pharmaceutical company Pfizer, which from 1 January 2016 will enter the Czech market with two haemophilia treatment products, is organising an international professional summit in Prague in September. Their representative asked CSH to cooperate in organising a press conference. On 24 September, a press conference will be held with the theme "Quality of Life." Michal Šťastný will speak on behalf of haemophilia patients with his personal story. Part of the summit is always the charitable event "Miles for Hemophilia," during which participants pedal on exercise bikes. For every mile completed, CSH will receive a certain financial amount; Pfizer guarantees CZK 100,000.

2) Preparation of a press conference with Baxter on the topic: "Current perspectives on haemophilia treatment in the Czech Republic" The association chairman informed Council members about the details of the press conference in Prague being prepared by the association with Baxter. The press conference is scheduled for Wednesday, 7 October 2015 at the multifunctional venue Tančící kuchyně in Prague. The topic is: "Current perspectives on haemophilia treatment in the Czech Republic." Participants will include health economist Dr Suchopár, MUDr. Peter Salaj, MUDr. Jan Blatný, and association representatives. The aim of the press conference is to clarify pressing issues such as: the costs of treating haemophilia patients with inhibitors and investment in prophylactic treatment.

3) Preparation of the annual conference It will be held in Seč on 23–24 October 2015. The chairman will prepare a report on the association's activities. Conference programme: approval of bylaws, rules of procedure, and electoral rules in connection with the change of CSH's legal form from a civic association to a registered society. The Council voted on whether the Council should have 5 or 7 members. Two Council members voted for maintaining a seven-member Council; four voted for a five-member Council. All association members will receive an invitation by post.

4) Review of payments according to bank statements Václav Tóth announced that he does not have invoices for web hosting and advance invoices for Zeměráj. He will compile a list of missing invoices and send it to Council members.

5) Review of membership fee payments and membership records Václav Tóth announced that total income from membership fees by the end of July was CZK 19,300; he will send Council members a list of paying members. Petr Grim and Václav Tóth will add email addresses from the Jezerka event registration to the database. Anastassiya Zidkova will create a database for better management of CSH membership records.

6) Preparation of the next newsletter issue The Council decided to publish one more newsletter issue this year. Martin Bohůn will prepare an article about the camp; additional content will include the most important articles from the website. The printed Newsletter will be published at least once a year. Vladimír Dolejš will arrange with Martin Bohůn where the newsletter will be printed. Anastassiya Zidkova will write an article about how to dispose of medicines and syringes.

7) Future of the summer haemophilia camp Martin Bohůn decided to resign from the position of head counsellor of the summer haemophilia camp. He also proposed his possible successor, who took time to think it over. The Council authorised Martin Bohůn to negotiate with his successor and present the decision to the Council by 4 October 2015.

8) Outline plan for the upcoming period

• Martin Bohůn proposed that it would be appropriate to organise another regional workshop by the end of the year, this time in Prague. The Council agreed that CSH would organise the workshop.
• Petr Grim put forward a proposal to create a framework work plan for the Council, including Council meetings. Vladimír Dolejš proposed holding a Council meeting in the first half of October.

9) Candidacy for the EHC congress in Prague The Council approved submitting a candidacy to host the EHC congress at the nearest available date.

10) Candidacy to host the WFH (World Federation of Hemophilia) congress in 2022 The chairman proposed attempting to bid again for the World Haemophilia Congress in Prague. He has already inquired with WFH about the criteria. Based on the information obtained, the Council will agree on the next steps.

11) Employment position at CSH for Martin Bohůn The Council agreed that the chairman would inquire with the Ministry of Labour and Social Affairs about the possibility of a grant to create one job position for a person with a disability. The Council unanimously voted to immediately pay Martin Bohůn CZK 1,000 per month.

Recorded by: Anastassiya Zidkova Verified by: Vladimír Dolejš In Prague, 25 August 2015