Minutes of the CSH Council Meeting 03.04.2017

The CSH Council discussed:

• The Council took note of A. Zidkova's resignation from her position on the CSH Council.
• The annual report has been submitted to the Ministry of Health.
• The survey "How Czech hemophilia patients live" has been concluded, with approximately 100 questionnaires completed; the statistician has been instructed to evaluate the results.
• On March 5, 2017, a letter was sent to SUKL (State Institute for Drug Control) expressing disagreement with the negative opinion on the preparation Elocta with extended half-life; the Minister of Health was informed.
• Hemophilia Day as part of World Hemophilia Day celebrations will take place on Saturday, April 22, 2017, at the Permonium Amusement Park in Oslavany near Brno. Details of the entire event are being finalized, the registration deadline is April 7, after which all registered participants will receive an email with more detailed information.
• The event "Together about Hemophilia," which took place in previous years at Hotel Jezerka and last year in Cestlice, will this year take place (most likely) on October 13-14, 2017. On this occasion, the electoral General Assembly (conference) will also be held. The venue will be specified, and a call for candidates for the Council and Audit Committee of CSH will be published.
• On May 31 or June 1, a seminar will be held at the Chamber of Deputies of the Parliament of the Czech Republic with representatives of professional rescue and emergency medicine associations; CSH will present the specific needs of hemophilia patients during emergency interventions together with hematologists.
• In April, the World Federation of Hemophilia will hold its general assembly via the web; the Chairman will represent the Society.
• Physiotherapist training under the Society's patronage has already taken place in Ostrava, Plzen, Usti nad Labem, Olomouc, Prague Motol, and most recently in Liberec.
• A regional seminar for Society members will take place on May 26 in Ostrava at Hotel Imperial; Plzen, Brno, and Liberec are planned for the future.
• From participation at the Ministry of Health meeting with patient organizations on March 30, it emerged that the definition of a patient organization still needs to be established for legislative purposes.
• At the turn of January and February this year, the traditional conference called "North American camping conference of hemophilia organizations" was held in the American state of Arizona. The Society presented its activities there and contributed to the program together with six other colleagues from Europe, Australia, and New Zealand. Overall, about 100 participants from all of North America attended the event. In the future, a similar event may be held in Europe through the European Haemophilia Consortium. European participants were asked to initiate negotiations with the EHC; the American side offered financial assistance.
• The Chairman and Vice-Chairman attended a meeting with ROCHE s.r.o., at which possibilities for cooperation were discussed.
• Updating the membership database regarding members' email addresses. A call will be published in the next issue of the Hemophilia Newsletter.

Membership fees An audit found that 117 members had not paid even once in 3 years - they face expulsion at the Conference; they can still settle the debt by the end of June 2017. As of April 3, 2017, the Society has 248 members.

Hemophilia Newsletter The Newsletter will be published in May - contributions should be submitted by May 25 by email to V. Dolejs.

Children's camp and adult rehabilitation stays

• May 13-20, the adult rehabilitation stay will take place in Visky near Letovice, interest is high; new prices: Society members - hemophilia patients CZK 1,500, members - non-hemophilia patients CZK 2,000, children of participants (members) under 15 CZK 2,000. Others pay full price. We will try to secure the lower participant fee income through sponsorship contributions.
• The summer children's camp will traditionally take place in Zubri in the Vysocina region, July 1-15. By the registration deadline, 45 children are registered, of which 31 have hemophilia/von Willebrand disease. Medical oversight is provided by the Pediatric Hematology Department of Brno University Hospital. The head camp leader will be Vojtech Hornik.

Miscellaneous

• Financial status as of March 31, 2017: cash CZK 3,443.00; bank CZK 1,783,030.24
• The Ministry of Health granted the Society a subsidy of CZK 267,600 for 2017, of which:
  • Rehabilitation and educational stays with health program CZK 168,000
• Editorial activity - Hemophilia Newsletter CZK 40,600
• Organizational-administrative services CZK 59,000

Recorded by: P. Slunsky Verified by: V. Dolejs In Prague, April 3, 2017