Minutes of the CSH Council Meeting 9.12.2024

Present

• Martin Bohůn
• Kateřina Altmanová
• Martin Žídek
• Michal Skořepa
• Marek Šimoník

Main agenda items and tasks

Ball planning

• Discussion:

  • Attendance at the ball is expected to be around 70–80 people.
  • Organisation of the tombola, wine procurement, and decorations is underway.
  • The possibility of gifts for attendees was discussed (macarons, small wine bottles with logo). The final decision on the choice of gifts is in progress.

• Tasks:

  • Michal will check the availability of small wine bottles including the possibility of custom labels.
  • Kateřina will arrange for wine and necessary materials to be delivered to her home for further processing.

Annual Award

• Discussion:

  • The award for a distinguished member will be presented at the ball.
  • 2022 Award – a meeting with other members is planned to make the presentation more personal.

• Tasks:

  • Michal will ensure delivery of the award and organise the meeting with M. Roušarová.

Event "With Dan to Ještěd"

• Discussion:

  • An event is planned for April 2025 as part of World Haemophilia Day.
  • A weekend stay with a hike to Ještěd. Accommodation options and participant co-payment were discussed.
  • The goal is to involve as many members as possible and ensure the event is accessible even for less mobile participants.

• Tasks:

  • Martin Bohůn will prepare informational texts about the event, arrange preparations, and communicate with accommodation facilities.
  • Other members will help search for larger accommodation.

Organisation and transparency

• Discussion:

  • Minutes from previous meetings will be published on the website and shared in the newsletter.
  • A new accounting system and document management were discussed.

• Tasks:

  • Martin Žídek will arrange shared access to online folders for accounting.
  • Kateřina will complete invoicing and necessary settlements.

Seaside recreational stay

• Discussion:

  • Finding a suitable destination and partner for organisation is still ongoing. Expectations have not yet been met.
  • Communication with travel agencies and a possible change of approach for next year was discussed (to be resolved by September at the latest).

• Tasks:

  • Michal and Kateřina will continue searching for alternatives and contacts.

Conference and collaboration

• Discussion:

  • Collaboration with the medical community and other patient organisations is planned.
  • The possibility of utilising insights from international conferences.
  • Martin Ipser attended an EHC event for inhibitor patients and wants to share the information in person with M. Bohůn.