Minutes of the CSH Council Session 7. 12. 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 companies with a request for a contribution to cover the difference. Each company in equal shares.

3. Applications for grants for 2020 were 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
   • Publishing activities (Haemophilia Newsletter), requested grant CZK 87,500
   • Organisational and administrative services, requested grant CZK 18,900
4. M. Bohůn reported on his attendance at a paramedics' event – the Pelhřimov Evening Emergency Medicine Conference. The attendance was successful, and we expect involvement in further events during the coming year. M. Bohůn will compile an overview of events.
5. L. Koblasa will contact all regional branches of the emergency medical service to check the level of awareness about the project.
6. Prepare an article about the outcome of discussions with the emergency medicine society, including a contact for emergency situations. M. Skořepa will arrange this.
7. Identifiers. Complaints about bracelet colour fading. BodyID provided a sample of a new one; replacement of faded bracelets is free of charge. M. Žídek will write the article.
8. WFH inspection visit. It took place on 3–4 December; CSH was represented by M. Bohůn and V. Dolejš, with support from the Prague Convention Bureau agency. Visit to the O2 Universum and the Prague Congress Centre. M. Bohůn reported on the proceedings.
9. The Council discussed the nomination for the Annual Award. M. Skořepa will arrange this.
10. The Council discussed the pricing for residential events for haemophilia patients and non-haemophilia patients. Adult stay: haemophilia patient member CZK 2,000; non-haemophilia member / haemophilia patient non-member CZK 3,000; others at actual cost. Children of haemophilia patients CZK 2,000. Summer Haemophilia Camp prices unchanged.
11. Joint meeting with new Hemojunior board members. Mutual presentation of event plans for next year took place. Agreement on joint organisation of a seaside trip in 2021; the importance of a doctor's attendance was emphasised.
12. On Saturday, 11 January 2020, the fifth gala evening of the Czech Hemophilia Society and Hemojunior will be held at the Hotel Alcron. A joint discussion on the programme took place.
13. Translation of a video about carriers. The Council will approach V. Horník for assistance.
14. Karolína Janderová's project (educational set about haemophilia aimed at primary schools). The Council will support the project and cooperate on its publication. M. Bohůn will obtain a price quote for production.
15. Organisation of World Haemophilia Day. The Council will try to arrange the illumination of public buildings in red as part of the celebrations. M. Žídek will find out how to approach and identify suitable buildings. Each Council member will contact institutions in their area. The possibility of involving regional members as well.
16. In 2020, a CSH Conference will take place; this will be addressed at the next Council meeting.
17. Intergenerational Meeting 2020. Agreement to organise it again at the EA Business Hotel in Jihlava, for 2 nights. The Council will try to reduce organisational costs. Tentative dates: 6–8 November 2020 or 20–22 November 2020. The Council will distribute a feedback request form on the organisation. M. Žídek will arrange this. A discussion on new formats for the programme took place (panel discussion format with a moderator on Saturday morning).
18. M. Žídek presented a proposal to engage in the activities of APO (Academy of Patient Organisations); approved. K. Altmanová informed about AVPO (Association of Public Benefit Organisations).
19. M. Bohůn presented a proposal to occasionally send news to the Helpnet organisation for publication in their newsletter, e.g., about World Haemophilia Day.
20. Hemojunior requested inquiring with EHC about the possibility of sending paediatric haemophilia patients from the Czech Republic to a camp in Barretstown, Ireland. M. Bohůn will look into this.
21. M. Skořepa presented a proposal to vote on the new appointment of a Vice-Chairman. M. Žídek was nominated; M. Bohůn and M. Skořepa voted in favour; L. Koblasa was absent; M. Žídek abstained. The proposal was accepted.
22. A double issue of the Haemophilia Newsletter will be published during Christmas.

Recorded by: Martin Žídek Verified by: Martin Bohůn, Jana Kalábová, Michal Skořepa, Lukáš Koblasa, Petr Slunský, Václav Tóth