Minutes of the CSH Council Session May 11-12, 2018

The Council discussed the following items:

1. Membership database changes were reviewed and a physical check of applications against the database was conducted.
2. Due to the introduction of GDPR, the membership application form needs to be revised both on the website and in paper form.
3. Electronic membership applications will be stored on Google Drive. /M. Bohun/
4. An email message requesting consent for member record-keeping will be prepared by Martin Zidek by May 20, 2018. Members without email addresses 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 part of new member applications and will be sent to all existing members. (M. Zidek)
6. Members who have died or have not paid membership fees for an extended period will be removed from the CSH database, following a notice that they will receive together with information about record-keeping.
7. Martin Bohun and Vaclav Toth are preparing an internal directive on CSH financial management.
8. Martin Bohun 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 benefit for 2017 and the decision form for the received grant for 2018 have been sent to the Ministry.
10. The Council approved that Vaclav Toth will prepare a current inventory of assets and 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 he has not done so.
12. The Council agreed that the CSH accountant will send all documents and invoices to the Society Chairman for review. The Society Chairman commits to sending quarterly bank statements to the Council.
13. An annual report with data on persons with blood coagulation 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 June 30.
14. The European Haemophilia Consortium (EHC) also conducts a survey called "Haemophilia Care in Europe" every three years. Its purpose is to determine and assess the level of hemophilia treatment in European countries and to what extent the principles of hemophilia care are reflected in reality. The submission deadline is May 31.
15. The CSH Council discussed the final phase of preparations for identifiers for emergency responders. The guidelines have already been delivered to the paramedic association; the project is in its final phase.
16. Martin Zidek and Michael Beren reported on a meeting with a representative of BodyID, the company manufacturing identification bracelets. The bracelet will be red, with the following information: 1) Diagnosis; 2) hemophilia treatment center; 3) phone contact for the hemophilia treatment center (to be further discussed with paramedics). For those interested, an online profile option will also be available, but this will be handled individually.
17. Martin Bohun reported on an informational leaflet being prepared for persons with blood coagulation disorders regarding the upcoming identifiers. These leaflets will be sent to all patients registered at individual hemophilia treatment centers, as well as to all CSH and HJ members. Information and promotion on the widest possible scale (via website, Facebook, media). Cooperation with hemophilia treatment centers is essential for the project.
18. Martin Zidek will prepare a brief description of the online profile associated with the identification bracelet, which will be included in the promotional leaflet.
19. Phone numbers for 24-hour service - already obtained from all centers, only the information from the Children's Hospital in Ceske Budejovice is missing.
20. On June 8-10, a conference for paramedics will take place in Liberec, where we would like to present the identifier innovation. Martin Bohun will contact MUDr. Jan Blatny, Ph.D.
21. The CSH Council and the Hemojunior Chairman agreed that members of both organizations (who have duly paid their membership fees) will receive one identifier package free of charge (excluding postage), while non-members will pay CZK 200 plus postage. The identifier package contains: an identification bracelet, a health insurance card overlay, an identification card for persons with blood coagulation disorders, and a thermal bag. Identifiers can also be ordered individually (some already have the hemophilia patient identification card).
22. Every CSH or Hemojunior member is entitled to one free identifier package. The package contains: a bracelet, a health insurance card overlay, an identification card, and a 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 September 14-16 in Jihlava /EA Business Hotel/. Martin Bohun reported on organizational matters; the CSH Council prepared a program proposal:

Friday, September 14: Topics for MUDr. Petr Salaj

• prophylaxis in adults
• news in hemophilia treatment
• medications associated with cardiovascular system issues - blood pressure, cholesterol
• vaccination
• when to rehabilitate and stress a joint after bleeding

Saturday, September 15: Lectures:

• Emergency services representative /??? Bc. Jezek???/ - 20 minutes 9:00-9:20
• Psychologists (Buckova, Pilat, Dostalova) - 15 minutes 9:20-9:40
• Psychosomatics /Mgr. Buckova/ - 30 minutes - 9:40 - 10:10
• Geneticist /MUDr. Gerychova/ - 20 minutes - 10:10 - 10:30

WORKSHOPS from 11:00

• Carriers - younger women, planning pregnancy - /geneticist/ to be contacted by J. Kalabova
• Carriers without men - mothers /Buckova/ - to be contacted by M. Bohun
• Preschool and early school age (up to 10 years) in the form of a game /Janderova + Pilat/ - J. Kalabova
• Men's group of hemophilia patients /L. Koblasa/ - 1.5 h
• Orthopedics /MUDr. Kasparek/
• Hematology /MUDr. Blatny/ - dedicate one workshop to von Willebrand patients
• Meeting with adolescents /Kalabova + Bohun/
• Physiotherapy (M. Katzerova)

Preparations

• Registration to open at the end of June, deadline September 1, 2018.
• Fee: with accommodation - members CZK 500 / night, non-members CZK 1,000 / night, day-only participants: 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 booth - explanation of the online profile for identification bracelets.
• Arrange childcare/nannies for looking after children.
• Common space for social gathering.
• Jana Kalabova would like to meet with von Willebrand patients during the event.

During the Council session in Visky, Society member Mr. Jalovec approached with a request for a certificate that would, in his words, authorize him to give lectures on hemophilia for both the general public and professional audiences. The CSH Council unanimously agreed that such authorization cannot be issued to Mr. Jalovec on behalf of CSH, as the Council does not have the mandate to do so, and offered him support with the possibility of Society involvement and personal participation of CSH Council members at his lectures. The Society Council further approved issuing a certificate to Mr. Jalovec confirming the lecture he prepared during the adult hemophilia stay in Visky, to which Mr. Jalovec agreed.

Recorded by: J. Kalabova Verified by: M. Bohun, M. Skorepa, M. Zidek, L. Koblasa