Minutes of the CSH Council Session December 7, 2019

The Council discussed the following items:

1. Budget for 2020. The Council discussed the projected budget for 2020. Projected expenses CZK 2,400,000, projected income CZK 900,000.
2. The Chairman will approach all pharmaceutical companies with a request for a contribution to cover the shortfall. Each company in equal parts.

3. Applications for grants for 2020 have been submitted to the Ministry of Health. Applications were submitted for the following areas:

   • Rehabilitation and educational stays for children, requested grant CZK 144,200
   • Rehabilitation and educational stays for adults, requested grant CZK 42,000
   • Editorial activity (Hemophilia Newsletter), requested grant CZK 87,500
   • Organizational-administrative services, requested grant CZK 18,900
4. M. Bohun reported on his participation at a paramedic event - the Pelhrimov Evening Emergency Medicine Conference. The participation was met with success, and we anticipate involvement in further events during the coming year. M. Bohun will compile an overview of events.
5. L. Koblasa will contact all regional branches of the emergency medical service and assess the level of awareness about the project.
6. Prepare an article about the outcomes of the meeting with the emergency medicine society, including a contact for emergency situations. M. Skorepa will arrange this.
7. Identifiers. Complaints about bracelet color fading. BodyID provided a sample of the new version; replacement of faded bracelets is free of charge. M. Zidek will write an article.
8. WFH inspection visit. It took place on December 3-4; M. Bohun and V. Dolejs attended on behalf of CSH, with support from the Prague agency Convention Prague Bureau. Visit to O2 Universum and the Prague Congress Centre. M. Bohun reported on the visit.
9. The Council discussed the nomination for the annual award. M. Skorepa will arrange this.
10. The Council discussed the pricing for accommodation events for hemophilia patients and non-hemophilia patients. Adult stay: Hemophilia patient member CZK 2,000, non-hemophilia member / hemophilia patient non-member CZK 3,000, others at actual cost. Children of hemophilia patients CZK 2,000. SHC (Summer Hemophilia Camp) prices unchanged.
11. Joint meeting with new Hemojunior board members. A mutual introduction of event plans for the coming year took place. Agreement on jointly organizing a seaside trip in 2021, with emphasis on the importance of physician attendance.
12. On Saturday, January 11, 2020, the fifth social evening of the Czech Hemophilia Society and Hemojunior will take place at Hotel Alcron. A joint discussion of the program took place.
13. Translation of the video about carriers. The Council will approach V. Hornik with a request for assistance.
14. Karolina Janderova's project (educational hemophilia set targeted at elementary schools). The Council will support the project and collaborate on its publication. M. Bohun will obtain a price quote for production.
15. Organization of World Hemophilia Day. The Council will try to arrange the illumination of public buildings in red as part of the celebrations. M. Zidek will find out how to proceed with approaching and identifying suitable buildings. Each Council member will contact institutions in their area. Regional members may also be involved.
16. The CSH Conference will take place in 2020; this will be addressed at the next Council meeting.
17. Intergenerational Meeting 2020. Agreement to organize it again at the EA Business Hotel in Jihlava, for 2 nights. The Council will try to reduce organizational costs. Tentative date November 6-8, 2020, or November 20-22, 2020. The Council will send out a feedback request form. M. Zidek will arrange this. Discussion took place about new formats to include in the program (panel discussion with a moderator on Saturday morning).
18. M. Zidek presented a proposal to participate in the activities of APO (Academy of Patient Organizations), approved. K. Altmanova informed about AVPO (Association of Public Benefit Organizations).
19. M. Bohun proposed occasionally sending news to the Helpnet organization for publication in their newsletter, e.g. about World Hemophilia Day.
20. Hemojunior requested obtaining information from the EHC regarding the possibility of sending child hemophilia patients from the Czech Republic to a camp in Barretstown, Ireland. M. Bohun will find out.
21. M. Skorepa proposed a vote on the new appointment for the Vice-Chairman position. M. Zidek was nominated; M. Bohun and M. Skorepa voted in favor, L. Koblasa was absent, M. Zidek abstained. The proposal was accepted.
22. A double issue of the Hemophilia Newsletter will be published over Christmas.

Recorded by: Martin Zidek Verified by: Martin Bohun, Jana Kalabova, Michal Skorepa, Lukas Koblasa, Petr Slunsky, Vaclav Toth