Minutes of the CSH Council Meeting 09.12.2017

The following items were discussed:

1. Information from the von Willebrand disease summit, which took place on December 1-2 in Prague and was organized by the World Federation of Hemophilia. An external participant was sent on behalf of CSH, and the CSH Council was represented by Martin Zidek. The Society received feedback from both WFH leadership and the WFH regional representative - positive evaluation. The situation still needs to be discussed with Hemojunior. CSH greatly values its good relations with Hemojunior and wishes to continue the fruitful cooperation.

2. The Council decided to reward Veronika Cepelakova and Romana Puckova for their help in organizing the treatment room during the von Willebrand disease summit in Prague.

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

a) printed overlay for health insurance card

b) personal hemophilia patient card

c) identification bracelet

d) bag labeled CAUTION - BLOOD COAGULATION DEFICIENCY for storing factor concentrates.

- Discuss with insurance companies the possibility of placing an identifier on the insurance card - task for J. Kalabova
- For proper identification, it is necessary to own a plastic hemophilia patient card. Paper cards may not be accepted by emergency medical services.
- Bracelets will be in black and red with the text Hemophilia A, B, vW, name, and address of the hemophilia treatment center with a phone contact for 24-hour service.
- Develop a unified procedure for hemophilia patient emergency situations (to be discussed with MUDr. Blatny and the Czech National Hemophilia Program) - task for M. Bohun

Draft text: Patients with hemophilia or other blood coagulation deficiencies are very carefully monitored by the treating physician at the hemophilia treatment center and, depending on the severity of their disorder, are preventively administered the missing coagulation factors. Every patient should always carry a hemophilia patient card containing important information for physicians. It is never certain when a person will need medical care... Factor concentrate must be administered even on suspicion of ischemia, preventively???? There are 9 hemophilia treatment centers in total, list specifically???

- Obtain the phone contact for 24-hour service from each hemophilia treatment center - task for M. Zidek.

4. The Society Chairman met with representatives of Novo Nordisk, and possibilities for cooperation and activities for 2018 were discussed. Novo Nordisk will traditionally support the Society in organizing World Hemophilia Day. The stay for hemophilia patients with inhibitors will take place in February 2018.

5. The Society Council discussed options for World Hemophilia Day 2018 celebrations. Options include Fajnpark in Chlumec nad Cidlinou or Dragon Boats in Pardubice. The best timeframe would be April 20 - May 5, 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 participate in an international meeting of patient organization representatives in Athens. The Society Council discussed this and decided to send Lukas Koblasa, who agreed to participate. It will take place on March 14-15, 2018.

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

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

9. The Council discussed the future of the social evening at Hotel Alcron and agreed to support the well-established event. Michal Skorepa commits to exploring and finding out about a new venue for the November social gathering in Moravia.

10. The second EHC Inhibitor Summit was held in Barretstown, Ireland. Jan Pucek attended on behalf of CSH at the invitation of the EHC. We will provide information about the event via the website.

11. An event called "What is Hemophilia" took place in Hradec Kralove, organized by the Koblasa siblings. The event was supported by Roche s.r.o., which additionally supported the joint project of the Czech Hemophilia Society and Hemojunior with CZK 30,000, aimed at communication with emergency services and unification of hemophilia patient identification.

12. A regional workshop took place in Brno on December 8. There was high attendance from both hemophilia patients and their families, as well as physicians and specialists from local hemophilia treatment centers.

13. The next regional meeting of hemophilia patients will take place in the Hradec Kralove Region in spring 2018. The Koblasa siblings are taking charge of organizing the meeting. The expected date is April 17, 2018.

14. Veronika Skodova from Media Planet publishing house contacted the Society. 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 diseases. The campaign will be published on February 28 in the national print run of Lidove noviny as an educational supplement. Financing is currently uncertain; based on experience from previous years, it is very expensive.

15. The Council discussed candidates for the annual award for 2018. Michal Skorepa will arrange the production of the award.

16. It is necessary to remind members about payment discipline by printing notices and payment slips with pre-printed details - task for M. Bohun.

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

18. The CSH Council approved the proposal by M. Bohun and J. Kalabova to organize a winter weekend for adolescent children who participate in hemophilia camps. It will take place in Zubri in the Vysocina region from February 15-18. The Society will cover the participants' accommodation costs, with each participant contributing CZK 500.

19. Martin Zidek was assigned the task of sending and tracking tickets for the social evening at Hotel Alcron.

20. Michal Skorepa takes on the task of contacting selected CSH members with requests for raffle prizes for the social evening at Alcron. This task also applies to other members of the CSH Council.

21. Three new membership applications were approved.

22. Tereza Koblasova commits to monitoring grant opportunities for 2018.

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

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

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 remuneration schedule in the future - task for V. Toth, deadline January 31, 2018.

27. Planned events in 2018.

- CSH Council Meeting **/January 27/**
- Social Evening at Hotel Alcron Radisson Blu **/January 27/**
- Winter meeting for adolescents in Zubri in Vysocina **/February 15-18/**
- Regional hemophilia meeting in the Hradec Kralove Region **/date and venue to be specified/**
- First meeting of persons with von Willebrand disease with physicians and other specialists **/date and venue to be specified/**
- World Hemophilia Day celebrations **/date and venue to be specified/**
- Rehabilitation stay for adult hemophilia patients in Visky near Letovice **/May 11-19/**
- Summer hemophilia camp in Zubri in Vysocina **/June 30 - July 14/**
- Intergenerational meeting of hemophilia patients **/tentative date September 14-16 - venue to be specified/**
- Autumn regional meeting **/date and venue to be specified/**

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

Recorded by: J. Kalabova Verified by: M. Bohun