Minutes of the CSH Council Meeting in Prague

Council members discussed:

1) Preparation of the Pfizer summit The pharmaceutical company Pfizer, which from January 1, 2016 will enter the Czech market with two hemophilia treatment products, is organizing an international medical summit in Prague in September. Their representative asked CSH for cooperation in organizing a press conference. Before the summit, on September 24, there will be a press conference on the topic of "Quality of Life." Hemophilia patient Michal Stastny will present his story there. Part of the summit is always a charitable event "Miles for hemophilia," where participants pedal on stationary bikes. For every mile ridden, CSH will receive a certain financial amount; Pfizer guarantees CZK 100,000.

2) Preparation of the press conference with Baxter on the topic: "Current perspective on hemophilia treatment in the Czech Republic" The Society Chairman informed Council members about the details of the press conference in Prague being prepared by the Society together with Baxter. The press conference is scheduled for Wednesday, October 7, 2015 at the multifunctional space Tancici kuchyne (Dancing Kitchen) in Prague. The topic is: "Current perspective on hemophilia treatment in the Czech Republic." Participants will include pharmacoeconomist Dr. Suchopar, MUDr. Peter Salaj, MUDr. Jan Blatny, and Society representatives. The goal of the press conference is to clarify pressing topics such as: the costs of treating hemophilia patients with inhibitors and investment in prophylactic treatment.

3) Preparation of the annual conference It will take place in Sec on October 23-24, 2015. The Chairman will prepare a report on the Society's activities. Conference program: approval of statutes, procedural and electoral rules in connection with the transformation of CSH 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 Society members will receive an invitation by mail.

4) Audit of payments based on bank statements Vaclav Toth announced that he does not have invoices for web hosting and advance invoices for Zemeraj. He will compile a list of missing invoices and send it to Council members.

5) Audit of membership fee payments and membership records Vaclav Toth announced that the total income from membership fees as of the end of July was CZK 19,300; he will send Council members a list of paying members. Petr Grim and Vaclav Toth will add email addresses from Jezerka event registrations to the database. Anastassiya Zidkova will create a database for better CSH member records.

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

7) Future of the summer hemophilia camp Martin Bohun decided to step down from the position of head leader of the summer hemophilia camp. He also proposed his possible successor, who asked for time to consider. The Council tasked Martin Bohun to negotiate with his successor and present the decision to the Council by October 4, 2015.

8) Outline plan for the upcoming period

• Martin Bohun proposed that it would be appropriate to organize another regional workshop before the end of the year, this time in Prague. The Council agreed that CSH will organize the workshop.
• Petr Grim proposed creating a framework work plan for the Council, including Council meetings. Vladimir Dolejs 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 earliest available date.

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

11) Employment position at CSH for Martin Bohun The Council agreed that the Chairman will inquire at the Ministry of Labor and Social Affairs about the possibility of a grant for creating one job position for a person with a disability. The Council unanimously voted to immediately begin paying Martin Bohun CZK 1,000 per month.

Recorded by: Anastassiya Zidkova Verified by: Vladimir Dolejs In Prague, August 25, 2015