Minutes of CSH Council Meeting, 3 April 2017

The CSH Council discussed:

• The Council acknowledged the resignation of A. Žídková from her position on the CSH Council.
• The annual report has been submitted to the Ministry of Health.
• The survey "How Czech Haemophilia Patients Live" has been closed, with approximately 100 questionnaires completed; the statistician has been instructed to evaluate the results.
• On 5 March 2017, a letter was sent to SÚKL (State Institute for Drug Control) expressing disagreement with the negative opinion on the extended half-life preparation Elocta; the Minister of Health was informed.
• Haemophilia Day as part of the World Haemophilia Day celebrations will take place on Saturday, 22 April 2017 at the Permonium Amusement Park in Oslavany near Brno. Details of the event are currently being finalised; the registration deadline is 7 April, after which all registered participants will receive an email with more detailed information.
• The event "Together About Haemophilia", which took place in previous years at the Jezerka Hotel and last year in Čestlice, will this year take place (most likely) on 13-14 October 2017. On this occasion, an electoral General Assembly (conference) will also be held. The venue will be confirmed, and a call for candidates for the Council and Audit Committee of the CSH will be published.
• On 31 May or 1 June, a seminar with representatives of professional associations of paramedics and emergency medicine will take place at the Chamber of Deputies of the Parliament of the Czech Republic; the CSH will jointly present with haematologists the specific needs of haemophilia patients during emergency interventions.
• In April, the World Federation of Hemophilia will hold its general assembly via the web; the Chairman will represent the association.
• Training of physiotherapists under the association's patronage has already taken place in Ostrava, Plzeň, Ústí nad Labem, Olomouc, Prague Motol and most recently in Liberec.
• A regional seminar for association members will take place on 26 May in Ostrava at the Imperial Hotel; Plzeň, Brno and Liberec are planned for the future.
• From participation at the meeting of the Ministry of Health with patient organisations on 30 March, it emerged that the definition of a patient organisation still needs to be established for legislative purposes.
• At the turn of January and February of this year, the traditional conference called the "North American Camping Conference of Hemophilia Organizations" took place in the US state of Arizona. The association presented its activities and participated in the programme together with six other colleagues from Europe, Australia and New Zealand. Overall, around 100 participants from across North America attended the event. In the future, a similar event may take place in Europe through the European Haemophilia Consortium. European participants were invited to begin 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 cooperation possibilities were discussed.
• Updating the membership database regarding members' email addresses. A call will be published in the next issue of the Haemophilia Newsletter.

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

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

Children's camp and adult rehabilitation stay

• The adult rehabilitation stay will take place from 13 to 20 May at Vísky near Letovice; interest is high; new prices: association members - haemophilia patients CZK 1,500, members - non-haemophilia patients CZK 2,000, children of participants (members) under 15 CZK 2,000. Others pay full price. We will try to compensate for lower income from participation fees through sponsorship contributions.
• The children's summer camp will traditionally take place in Zubří in the Vysočina region from 1 to 15 July. By the registration deadline, 45 children have been registered, of whom 31 have haemophilia/von Willebrand disease. Medical supervision is provided by the Paediatric Haematology Department of the Brno University Hospital. The head camp leader will be Vojtěch Horník.

Miscellaneous

• Financial status as of 31 March 2017: cash CZK 3,443.00; bank account CZK 1,783,030.24
• The Ministry of Health has granted the association a subsidy of CZK 267,600 for 2017, comprising:
  • Rehabilitation and educational stays with health programme CZK 168,000
• Publishing activities - Haemophilia Newsletter CZK 40,600
• Organisational and administrative services CZK 59,000

Recorded by: P. Slunský Verified by: V. Dolejš Prague, 3 April 2017