Minutes of the CSH Council Session 16. 2. - 17. 2. 2019

The Council discussed the following items:

1. Membership database audit – the Council decided to remove 61 members for failure to comply with regular membership conditions (long-term non-payment of membership fees). The current membership count after the audit is 209. The membership numbers affected by the removal are: 22, 32, 46, 53, 92, 102, 123, 149, 150, 215, 216, 219, 259, 269, 285, 315, 347, 348, 357, 365, 370, 376, 378, 399, 405, 406, 425, 426, 431, 432, 436, 474, 478, 511, 532, 554, 587, 601, 612, 615, 616, 638, 641, 650, 658, 671, 672, 704, 706, 707, 713, 714, 715, 717, 720, 721, 732, 736, 737, 740, 741
2. Certificates of new CSH membership will be sent only after the membership fee has been credited to the association account (thereby confirming the new member's regular membership). M. Žídek was tasked with sending certificates and information to new members.
3. The Council decided to inform haemophilia patients and persons with type III von Willebrand disease about the association's activities through a personal letter in cooperation with haemophilia centres. The association will prepare an informational letter and ensure distribution in cooperation with the centres. /M. Bohůn; J. Kalábová/
4. Update and revision of contracts concerning the loan of CPM devices /UHKT, University Hospital Brno – Bohunice, University Hospital Hradec Králové/. /M. Skořepa, M. Bohůn/
5. Applications for grants for 2019 were submitted to the Ministry of Health. This year, for the first time, also in electronic form. Due to the Ministry's late grant call, applications could only be submitted for projects to be implemented in the second half of 2019. Any grant received therefore cannot be used for the adult rehabilitation stay in Rokytěnka, which is planned for May 2019. The association must secure funding from other sources. Applications were submitted for the following areas:
   • G/1 Rehabilitation and educational stays, requested grant CZK 147,000
   • G/3 Publishing activities, requested grant CZK 87,500
   • G/5 Organisational and administrative services, requested grant CZK 61,830
6. The association sent the Ministry of Health the financial settlement of non-investment grants from the state budget for 2018 under the "Grant Support Programme" and the statement of actual costs and evaluation of project benefits /V. Tóth and M. Bohůn/
7. Identifiers for persons with blood clotting disorders – the 2nd round of orders has been dispatched. The distribution system has been changed: no longer cash on delivery, but prepaid postage and handling; after the amount is received in the CSH account, identifiers are sent to the recipient. The deadline for the 3rd round is 28 February, after which the individuals concerned will receive an email with payment instructions. Thanks to the Bereň family for their help with distribution.
8. During March, the position regarding the Interdisciplinary Statement on the Administration of Coagulation Factor in Haemophilia Patients in Pre-hospital Emergency Care within the project with emergency medicine should be clarified.
9. The association has some new materials and publications available (Handbooks not only for children and adults with haemophilia; Calendar from haemophilia camps in Zubří and Bělč; Didactic haemophilia board game; First volume of Medicomix - Haemophilia). All of these, including the original book publications, can be ordered through the association website.
10. A brochure by the European Haemophilia Consortium on news in haemophilia treatment, including extended half-life (EHL) concentrates, is also in production. A brochure of patient stories from the lives of Czech haemophilia patients and their loved ones is also planned.
11. Summer Haemophilia Camp (SHC) – the previous RS Zubří facility near Nové Město na Moravě remains closed until further notice for technical reasons. The association is intensively searching for a replacement; Šafránkův Mlýn near Tišnov is under consideration, with an available date of 28 July – 8 August (Sunday to Thursday – 12 days). Financing – the accommodation fee for haemophilia/von Willebrand patients and siblings remains unchanged even in case of a price increase. Others will pay actual accommodation costs (friends, etc.).
12. The adult haemophilia rehabilitation stay in Rokytnice nad Jizerou is already fully booked. The Council discussed the possibility of inviting a specialist (haematologist, orthopaedist – mobile ultrasound). Consider whether to look for a facility with larger capacity next year so that more applicants can be accommodated.
13. At the beginning of February, the 12th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) was held in Prague, attended by some 2,500 professionals from around the world. The congress was held under the patronage of Minister of Health Adam Vojtěch, who attended the opening press conference together with EAHAD President Professor Michael Makris, Congress President Jan Blatný, and our association Chairman Martin Bohůn.
14. Haemophilia C – information to be obtained from WFH pages or other international sources. Add information to the website /L. Koblasa/
15. WFH announced a candidacy for hosting the World Congress in 2024. The association Council approved negotiating with agencies and pursuing this candidacy /M. Bohůn/
16. Informational leaflets about identifiers will be delivered to UHKT /M. Skořepa/
17. Seaside stay for haemophilia patients in 2020. The Council decided to organise this stay. It would be a week outside the summer holidays, ideally in June or September, in Greece. We will try to provide preliminary information during the first half of 2019. The trip capacity is approximately 40 persons. Discounted price for members with haemophilia (CZK 5,000). We will try to arrange the presence of a physiotherapist or nurse for the stay. /M. Skořepa/
18. Schedule of events for 2019:
    • 2nd kinesiotaping course on 6 April at the outpatient wing of the rehabilitation department of University Hospital Plzeň, with a capacity of up to 15 people.
    • World Haemophilia Day – the closest agreement is at the Landek Mining Museum in Ostrava, date: Saturday, 27 April. The association is intensively working on the programme; we will publish more information on the website in early March.
    • Adult haemophilia rehabilitation stay at Hotel Rokytěnka in the Orlické hory /18–25 May/
    • Summer Haemophilia Camp at RS Šafránkův Mlýn in the Vysočina region /28 July – 8 August/
    • Intergenerational meeting "Together about Haemophilia" at EA Business Hotel Jihlava /15–17 November 2019/
    • CSH Conference – planned during the Intergenerational Meeting in Jihlava
    • Regional meeting of haemophilia patients in the Liberec Region – autumn 2019 /date to be confirmed/
    • Meeting of haemophilia patients with inhibitors, Barretstown – Ireland /28 November – 1 December/
19. As part of the activities of the Office of the Public Defender of Rights, the representative of the Department for Protection of Rights of Persons with Disabilities, Mgr. Havlová, approached the association with the aim of raising awareness about haemophilia on World Haemophilia Day. /M. Bohůn/
20. In cooperation with ROCHE, a press conference is planned for World Haemophilia Day.
21. Together with the Garmedis agency, the association and Hemojunior discussed the possibility of creating an informational video about haemophilia that could run either during prime time on TV or as online advertisements. Garmedis promised to create a proposal and overall budget. Further cooperation with Meditorial in connection with the hemofilie.cz website was also discussed.
22. Programme for the intergenerational meeting in Jihlava. Maintain the format of the meeting, probably again two days, with a focus on the possibility of individual consultations. Some topics were discussed:
    • patient vs. doctor relationship,
    • Bureau of Insurers (travel),
    • psychological area (ageing), siblings of haemophilia patients
23. Learn more about the system and device enabling localisation of subcutaneous veins for easier factor application, the so-called Vein Viewer. Try to find a distributor/manufacturer for the Czech Republic /Council members/
24. EHC is organising the first meeting of women with blood clotting disorders and carriers in Frankfurt from 24–26 May. The association Council discussed and approved sending Tereza Říhová to this event; she agreed to attend. A grant for financing the participation was submitted.
25. The next meeting of the Czech National Haemophilia Programme will take place during the Pařízek Days in Ostrava on 6 March from 16:00. The association will have its representative at the meeting.
26. The association is intensively working on a new version of the website; Martin Žídek has already presented the basic design.
27. At the end of 2018, another meeting of haemophilia patients with inhibitors took place in Barretstown, Ireland. The association was represented by Martin Ipser; a report on the event will be published on the website and in the next issue of the Haemophilia Newsletter in the coming days.
28. The next CSH Council session is planned during the adult stay in Rokytnice in the Orlické hory /18–25 May/

Recorded by: M. Bohůn Verified by: J. Kalábová, M. Skořepa, M. Žídek, L. Koblasa