Minutes of the CSH Council Session 11. 5. - 12. 5. 2018

The Council discussed the following items:

1. Changes in the membership database were reviewed and a physical check of application forms against the database was carried out.
2. Due to the introduction of GDPR, it is necessary to revise the membership application form both on the website and in paper form.
3. Membership application forms in electronic format will be stored on Google Drive. /M. Bohůn/
4. Martin Žídek will prepare the email for consent to member records by 20 May 2018. Members who do not have an email address will be contacted by post.
5. Work is underway on creating an internal directive "Declaration on Personal Data Processing," which will be available upon request to all members. Additionally, "Information on Personal Data Processing" – this document will become a new part of new member applications and will be sent to all existing members (M. Žídek).
6. Members who have died or have not paid membership fees for a long time will be removed from the CSH database, following a notification that they will receive together with information about the records.
7. Martin Bohůn and Václav Tóth are preparing an internal financial management directive for CSH.
8. Martin Bohůn reported on communications with pharmaceutical companies.
9. A grant of CZK 267,600 was received from the Ministry of Health. The evaluation of the project benefits for 2017 and the grant decision form for 2018 were sent to the Ministry.
10. The Council approved that Václav Tóth will prepare a current inventory of assets and that purchases of tangible fixed assets over CZK 500 will be recorded. All purchases must be approved by the CSH Council.
11. The former chairman will be requested to hand over CSH property by the end of June 2018 if it has not been handed over by then.
12. The Council agreed that the CSH accountant will send all receipts and invoices to the association chairman for review. The association chairman commits to sending Council members quarterly bank account statements.
13. An annual report with data on persons with blood clotting disorders and the level of access to treatment in the Czech Republic will be prepared for the World Federation of Hemophilia (WFH). The submission deadline is 30 June.
14. Every three years, the European Haemophilia Consortium (EHC) also conducts a survey called "Haemophilia Care in Europe." Its purpose is to determine and assess the level of haemophilia treatment in European countries and the extent to which the principles of haemophilia care are reflected in reality. The submission deadline is 31 May.
15. The CSH Council discussed the final phase of preparations for emergency service identifiers. The guidelines have already been handed over to the paramedics' association; the project is in its final phase.
16. Martin Žídek and Michael Bereň reported on a meeting with a representative of the company BodyID, which manufactures identification bracelets. The bracelet will be red, with the following information: 1) Diagnosis; 2) haemophilia centre; 3) telephone contact for the haemophilia centre (to be further discussed with paramedics). Interested parties will also have the option of an online profile, though this will be handled individually.
17. Martin Bohůn reported on a leaflet being prepared for persons with blood clotting disorders regarding the planned identifiers. These leaflets will be sent to all patients registered at individual haemophilia centres, as well as to all CSH and HJ members. Information and promotion on the widest possible scale (via website, Facebook, media). Cooperation with haemophilia centres on the project is essential.
18. Martin Žídek will prepare a brief note about the online profile related to the identification bracelet, which will be included in the promotional leaflet.
19. Telephone numbers for 24-hour services have been obtained from all centres; only the data from the Children's Hospital in České Budějovice is still missing.
20. On 8–10 June, a conference for paramedics will be held in Liberec, where we would like to present the new identifiers. Martin Bohůn will approach MUDr. Jan Blatný, Ph.D.
21. The CSH Council and the Hemojunior Chairman agreed that members of both associations (who are up to date with membership fee payments) will receive one identifier package free of charge (excluding postage); non-members will pay CZK 200 plus postage. The identifier package contains: identification bracelet, health insurance card sticker, identification card for persons with blood clotting disorders, and a thermal bag. Identifiers can also be ordered individually (some already have the haemophilia identification card).
22. Every CSH or Hemojunior member is entitled to one free identifier package. The package contains: bracelet, health insurance card sticker, identification card, thermal bag. In case of loss, a fee will be charged.
23. The CSH Council discussed the September intergenerational meeting, which will take place on 14–16 September in Jihlava /EA Business Hotel/. Martin Bohůn reported on the organisational aspects of the event; the CSH Council prepared a draft programme:

Friday 14 September: topics for MUDr. Petr Salaj

• prophylaxis in adults
• news in haemophilia treatment
• medications related to cardiovascular issues – blood pressure, cholesterol
• vaccination
• when to rehabilitate and load a joint after a bleed

Saturday 15 September: lectures:

• Paramedics representative /??? Bc. Ježek???/ – 20 minutes 9:00-9:20
• Psychologists (Bůčková, Pilát, Dostálová) – 15 minutes 9:20-9:40
• Psychosomatics /Mgr. Bůčková/ - 30 minutes - 9:40 – 10:10
• Geneticist /MUDr. Gerychová/ - 20 minutes – 10:10 – 10:30

WORKSHOPS from 11:00

• Carriers – younger, planning pregnancy – /geneticist/ to be contacted by J. Kalábová
• Carriers without men – mothers /Bůčková/ - to be contacted by M. Bohůn
• Preschool and younger school age (up to 10 years) in a playful format /Janderová + Pilát/ - J. Kalábová
• Men's group of haemophilia patients /L. Koblasa/ - 1.5 h
• Orthopaedics /MUDr. Kašpárek/
• Haematology /MUDr. Blatný/ - dedicate one workshop to von Willebrand patients
• Meeting with adolescents /Kalábová + Bohůn/
• Physiotherapy (M. Katzerová)

Preparations

• Registration to open at the end of June; deadline 1 September 2018.
• Fee: with overnight stay – members CZK 500/night, non-members CZK 1,000/night; day attendance only – members CZK 200 / non-members CZK 400; children of members under 18 attend free of charge; children of non-members CZK 500.
• Discussion of the BodyID promotional stand – explanation of the online profile for identification bracelets.
• Arrange childminders for babysitting.
• Premises for socialising.
• Jana Kalábová would like to meet with von Willebrand patients during the event.

During the Council session in Vísky, association member Mr Jalovec approached the association with a request to issue a certificate that would, in his words, authorise him to give lectures on haemophilia for both lay and professional audiences. The CSH Council unanimously agreed that such authorisation cannot be issued on behalf of CSH, as the Council does not have the mandate to do so, and offered him support with the possibility of involving the association and personal participation of CSH Council members in his lectures. The association Council further approved issuing Mr Jalovec a confirmation of the lecture he prepared during the adult haemophilia stay in Vísky, to which Mr Jalovec agreed.

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