Minutes of CSH Council Meeting, 9 December 2017

The following items were discussed:

1. Information from the Summit on von Willebrand Disease, which took place on 1-2 December in Prague and was organised by the World Federation of Hemophilia. The CSH sent an external participant, and the CSH Council was represented by Martin Žídek. The association received feedback from the WFH leadership and the WFH regional representative - a positive evaluation. The situation still needs to be discussed with Hemojunior. The CSH greatly values its good relations with Hemojunior and would like to continue this good cooperation.

2. The Council decided to reward Veronika Čepeláková and Romana Půčková for their help in organising the medical station during the von Willebrand Disease Summit in Prague.

3. The Council agreed on the following unified identifiers for emergency responders:

a) print on the health insurance card

b) personal haemophilia patient card

c) identification bracelet

d) bag labelled "WARNING: BLOOD CLOTTING DEFICIENCY" for storing derivatives.

- It is necessary to discuss with health insurance companies the possibility of placing an identifier on the insurance card - task for J. Kalábová
- A plastic haemophilia patient card is essential for proper identification. Paper cards may not be accepted by emergency medical services.
- Bracelets will be in black and red with the text Haemophilia A, B, vW, name and address of the haemophilia centre with a 24/7 phone contact.
- Develop a unified procedure for emergency situations involving a haemophilia patient (to be discussed with MUDr. Blatný and the ČNHP) - task for M. Bohůn

Draft text: Patients with haemophilia or other blood clotting deficiencies are very closely monitored by the treating physician at the haemophilia centre and, depending on the severity of their disorder, are preventively administered the missing clotting factors. Every patient should always carry a haemophilia patient card containing important information for doctors. It is never certain when the person will need medical care.... The derivative must be administered even in case of suspected ischaemia, preventively???? There are 9 haemophilia centres in total, list specifically???

- Determine the 24/7 contact phone number at each haemophilia centre - task for M. Žídek.

4. The association Chairman met with representatives of Novo Nordisk; cooperation possibilities and activities for 2018 were discussed. Novo Nordisk will traditionally support the association in organising World Haemophilia Day. A stay for haemophilia patients with inhibitors will take place in February 2018.

5. The association Council discussed options for the 2018 World Haemophilia Day celebrations. Options include Fajnpark in Chlumec nad Cidlinou or Dragon Boats in Pardubice. The preferred timeframe is 20 April - 5 May 2018. We will inform about the outcome of negotiations and the final venue selection via the website and Facebook.

6. ROCHE offered the opportunity to attend an international meeting of patient organisation representatives in Athens. The association Council discussed this and decided to send Lukáš Koblasa, who agreed to participate. It will take place on 14-15 March 2018.

7. A workshop focused on extended half-life preparations and gene therapy took place in Lisbon. There was a brief meeting with EHC representatives and an introduction of the new CSH leadership. The association was asked to contribute to the EHC newsletter during 2018.

8. Communication took place with the EHC regarding the change of venue for the EHC Conference 2018 in Baku. The EHC recently began conference preparations and discovered that the visa application in Azerbaijan requires participants to state whether they are carriers of hepatitis C or HIV. This fact would prevent many haemophilia patients from attending, so the EHC decided to initiate new negotiations; member organisations almost unanimously approved the change, and thus the EHC Conference for 2018 is moving from Baku to Brussels.

9. The Council discussed the future of the gala evening at the Alcron Hotel and agreed to support the established event. Michal Skořepa commits to exploring options for a new venue for the November social gathering in Moravia.

10. The second EHC Inhibitor Summit took place in Barretstown, Ireland. Jan Půček attended on behalf of the CSH at the EHC's invitation. We will report on the event via the website.

11. An event called "What Is Haemophilia" took place in Hradec Králové, organised by the Koblasa siblings. The event was held with the support of Roche s.r.o., which additionally supported with CZK 30,000 a joint project of the Czech Hemophilia Society and Hemojunior aimed at communication with emergency services and unification of haemophilia patient identification.

12. A regional workshop took place in Brno on 8 December. There was strong attendance from both haemophilia patients and their families, as well as doctors and experts from local haemophilia centres.

13. The next regional meeting of haemophilia patients will take place in the Královéhradecký Region in spring 2018. The Koblasa siblings are taking charge of the organisation. The expected date is 17 April 2018.

14. The association was contacted by Veronika Škodová from Media Planet publishing. After a year, they are again preparing an educational campaign on the topic of "Rare Diseases". The purpose of the campaign is to educate the general public about these conditions. The campaign will be published on 28 February in a nationwide print run of Lidové Noviny as an educational insert. Financing is currently uncertain; based on experience from previous years, it is very costly.

15. The Council discussed candidates for the Annual Award for 2018. Michal Skořepa will arrange the production of the award.

16. Payment discipline needs to be reminded through printed notices and payment slips with pre-printed details - task for M. Bohůn.

17. A request was raised for the possibility of psychological and pedagogical training for summer haemophilia camp leaders.

18. The CSH Council approved the proposal by M. Bohůn and J. Kalábová to organise a winter weekend for adolescent children who participate in haemophilia camps. It will take place in Zubří in the Vysočina region from 15 to 18 February. The association will cover participants' accommodation costs; each participant will contribute CZK 500.

19. M. Žídek is tasked with sending and tracking tickets for the gala evening at the Alcron Hotel.

20. Michal Skořepa takes on the task of sending tombola donation requests for the Alcron gala evening to selected CSH members. This task also applies to other Council members.

21. Three new membership applications were approved.

22. Tereza Koblasová commits to conducting grant monitoring for 2018.

23. The Council will approach potential sponsors with a request for financial support of the association.

24. The Council agreed that the payment of remuneration for the accountant and association leadership will be discussed during January.

25. The Council approves remuneration for the Chairman and Treasurer until the end of 2017 in the amount of CZK 1,000 per month, effective until the end of the year.

26. The Council committed to conducting an asset inventory and preparing a list of remunerations in the future - task for V. Tóth, deadline 31 January 2018.

27. Planned events in 2018.

- CSH Council meeting **/27 January/**
- Gala evening at the Alcron Radisson Blu Hotel **/27 January/**
- Winter gathering for adolescent children in Zubří in the Vysočina region **/15-18 February/**
- Regional haemophilia meeting in the Královéhradecký Region **/date and venue to be confirmed/**
- First meeting of persons with von Willebrand disease with doctors and other experts **/date and venue to be confirmed/**
- World Haemophilia Day celebrations **/date and venue to be confirmed/**
- Rehabilitation stay for adult haemophilia patients in Vísky near Letovice **/11-19 May/**
- Summer haemophilia camp in Zubří in the Vysočina region **/30 June - 14 July/**
- Intergenerational meeting of haemophilia patients **/preliminary date 14-16 September - venue to be confirmed/**
- Autumn regional meeting **/date and venue to be confirmed/**

28. The next CSH Council meeting is planned for 27 January at 11:00 in Prague. Premises will be arranged by Martin Žídek.

Recorded by: J. Kalábová Verified by: M. Bohůn