Minutes of the CSH Council Session 27.01.2018

The following items were discussed:

1) Task review

2) Deliver missing issues of the Newsletter to the National Library of the Czech Republic /M. Bohůn/

3) M. Bohůn and M. Žídek attended a meeting with Shire, at which the following items were discussed:

• review of activities for the year and plan for 2018,
• information for paramedics, printing on VZP (health insurance) cards, thermal bag for concentrates, red ID bracelet, informational leaflet, and unified procedures for paramedics – prepared in cooperation with the CNHP,
• identifier package available on request from CSH for haemophilia patients – including non-members,
• obtain 24-hour phone line numbers /M. Žídek/,
• organise a meeting at the Chamber of Deputies of the Czech Republic within two months,
• theme for World Haemophilia Day – carriers (also within regional workshops; pilot meeting in Brno, followed by Prague),
• positive feedback on regional workshops,
• workshop planned in Hradec Králové – doc. Dulíček, date 17 April,
• association promotion (leaflet, roller banner, information about identifiers)

4) Identification and processing of attendance fees for the gala evening at the Alcron for V. Tóth /M. Žídek/

5) Changes in the association register have been recorded; CSH statutory representative is Martin Bohůn; bank access still needs to be arranged (cancellation of the signature specimen for V. Dolejš) /M. Bohůn/

6) The Annual Award is in production; it is necessary to ensure continuity in the future so that regular awarding is maintained /M. Skořepa/

7) Gala evening in Moravia – November or February; Zdeněk Vojkůvka is sourcing venues.

8) World Haemophilia Day

Fajnpark near Hradec Králové is being considered; inquiry for the date of 14 April; M. Skořepa and L. Koblasa will arrange a personal visit and discuss possibilities; requirements: approx. 100 people, wheelchair access, families with children and adults, start at 10–11 am, catering, animator/host – programme. In cooperation with Novo Nordisk. Alternative: Čertovina; L. Koblasa will look into further options.

9) Intergenerational meeting

Will take place in Jihlava on 14–16 September (2 nights). Childminders for babysitting will again be arranged; the professional programme should focus more on small workshop groups rather than joint lectures.

Topics:

• carriers
• von Willebrand disease
• psychology
• genetics
• haematology (paediatric, adult)
• physiotherapy
• preschool children (explaining application, in a playful format)
• invite a paramedics representative

Workshops - proposals:

• carriers (without men) – mothers
• carriers – younger, planning pregnancy
• men's group of haemophilia patients
• haemophilia patients – fatherhood
• preschool and younger school age (children)
• von Willebrand disease
• psychosomatics (lecture)
• haematology (paediatric, adult) – MUDr. Salaj, MUDr. Blatný; combined with orthopaedics???
• meeting for adolescents – Martin B. and Jana K.

10) GDPR and consents

• M. Žídek informed about the requirements arising from the new data protection regulation (GDPR), taking effect on 28 May. It is necessary to obtain new consents from all members, to be combined with the membership database update,
• basic information about database access security,
• prepare the wording of the consent by the time of the Haemophilia Day in Hradec Králové /17 April/,
• try to obtain as many signatures (consents) as possible also during joint association events /M. Žídek/.

11) Website

• prepare travel information – to the Czech Republic (English) and abroad – /Jana K./
• clarify the situation regarding Czech travel insurance (M. Bohůn will look up information that V. Dolejš requested from the Czech Insurers' Bureau)
• new website design – proposal to be prepared by /M. Žídek/

12) For easier communication, prepare email lists – haemophilia patients under 18, haemophilia patients over 18 – /M. Žídek/

13) Václav Tóth reported on the association's financial situation:

• The association's total financial resources as of 1 January 2017 amounted to CZK 1,686,243.29. Of this: cash in hand CZK 4,122 and current account CZK 1,682,121.29. Balance as of 31 December 2017 total: CZK 1,589,732.28. Of this: cash in hand CZK 5,382.00 and current account CZK 1,584,350.28. The loss for 2017 thus amounts to CZK 96,511.01.
• The CSH membership base as of 31 December 2017 numbers 253 members. Regarding membership fee payments, only 114 members paid their fees in 2017; the others have not paid their membership fee for that year. Among them are 7 members who last paid for 2016, 14 members who last paid in 2015, and 11 members who last paid in 2014.
• inventory of tangible assets handed over to M. Bohůn; arrange inventory of camp storage assets /V. Horník/
• V. Tóth will handle communication with the Ministry of Health (report grant spending by the end of February; audit report by the end of March; annual report must be submitted by 30 June) and the Tax Office
• remuneration for V. Tóth CZK 1,000 per month – approved
• remuneration for M. Bohůn – CZK 2,000 per month – approved
• find additional funding sources – grants, etc. – T. Koblasová will monitor

14) Approval of a new membership application and termination of a membership application due to the death of a member.

15) The next CSH Council meeting will take place on 28 February at 19:00 via Skype.

Recorded by: M. Žídek Verified by: M. Bohůn