Minutes of the CSH Council Session 27.01.2018

The following items were discussed:

1) Review of tasks

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

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

• review of activities for the past year and plan for 2018,
• information for emergency responders, overlay for VZP (General Health Insurance Company) insurance cards, thermal bag for factor concentrates, red ID bracelet, informational leaflet and unified procedure for emergency responders - developed in cooperation with the Czech National Hemophilia Program.
• identifier package available to hemophilia patients upon request from CSH - including non-members,
• obtain 24-hour phone line numbers /M. Zidek/,
• organize a meeting at the Chamber of Deputies of the Parliament of the Czech Republic within two months
• topic for World Hemophilia Day - carriers (also within regional workshops, pilot meeting in Brno, followed by Prague),
• positive feedback on regional workshops
• a workshop is planned in Hradec Kralove - doc. Dulicek, date April 17,
• Society promotion (leaflet, banner stand, identifier information)

4) Identification and processing of participant fees for the social evening at Alcron for V. Toth /M. Zidek/

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

6) The annual award is in production; continuity needs to be ensured for the future to maintain regular recognition /M. Skorepa/

7) Social evening in Moravia - November or February; Zdenek Vojkuvka is looking into venue options.

8) World Hemophilia Day

Fajnpark near Hradec Kralove is an option; inquiry for the date of April 14; M. Skorepa and L. Koblasa will arrange a personal visit and discuss possibilities; requirements: approx. 100 people, wheelchair-accessible, families with children and adults, start at 10-11 AM, catering, entertainer/moderator - program. In cooperation with Novo Nordisk. Alternative: Certovina; L. Koblasa will find out other options.

9) Intergenerational meeting

Will take place in Jihlava, September 14-16 (2 nights). Childcare/nannies will again be arranged; the professional program will be more focused on small group workshops rather than joint lectures.

Topics:

• carriers
• von Willebrand disease
• psychology
• genetics
• hematology (pediatric, adult)
• physiotherapy
• preschool children (explain factor administration, in the form of a game)
• invite an emergency medical services representative

Workshop proposals:

• carriers (without men) - mothers
• carriers - younger women, planning pregnancy
• men's group of hemophilia patients
• hemophilia patients - fatherhood
• preschool and early school age (children)
• von Willebrand disease
• psychosomatics (lecture)
• hematology (pediatric, adult) - MUDr. Salaj, MUDr. Blatny; together with orthopedics???
• meeting for adolescents - Martin B. and Jana K.

10) GDPR and consents

• M. Zidek informed about the requirements arising from the new General Data Protection Regulation (GDPR), effective May 28. New consents need to be obtained from all members; this should be combined with updating the membership database.
• basic information about database access security
• prepare the consent wording before Hemophilia Day in Hradec Kralove /April 17/
• try to collect as many signatures (consents) as possible also during joint Society events /M. Zidek/

11) Website

• prepare information about travel - to the Czech Republic (English) and abroad - /Jana K./
• clarify the situation with Czech travel insurance (M. Bohun will search for information requested by V. Dolejs from the Czech Insurers' Bureau)
• new website design - proposal to be prepared by /M. Zidek/

12) For easier communication, prepare email lists - hemophilia patients under 18, hemophilia patients over 18 - /M. Zidek/

13) Vaclav Toth reported on the Society's financial situation:

• The financial status of the Society as of January 1, 2017 totaled CZK 1,686,243.29. Of which: cash in hand CZK 4,122, and current account: CZK 1,682,121.29. Status as of December 31, 2017 total: CZK 1,589,732.28. Of which cash in hand CZK 5,382.00 and current account CZK 1,584,350.28. The loss for 2017 is thus CZK 96,511.01.
• The CSH membership base as of December 31, 2017 has 253 members. Regarding membership fee payments, only 114 members paid their fees in 2017; the rest have not paid their membership fees for that year. Among them are 7 members who last paid in 2016, 14 members who last paid in 2015, and 11 members who last paid in 2014.
• tangible asset records have been handed over to M. Bohun; camp storage inventory to be arranged /V. Hornik/
• V. Toth 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 June 30) and the Tax Office
• remuneration for V. Toth CZK 1,000 per month - approved
• remuneration for M. Bohun - CZK 2,000 per month - approved
• find additional sources of funding - grants, etc. - T. Koblasova will monitor

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

15) The next CSH Council meeting will take place on February 28 at 7:00 PM via Skype.

Recorded by: M. Zidek Verified by: M. Bohun