Minutes of the CSH Council Session 14.4.2016

1. M. Bohůn reported on the status of preparations for the World Haemophilia Day celebration on 23 April at Loučeň Castle in Central Bohemia. 160 participants have registered. Guided tours of the castle, a knight's tournament, and similar activities are planned. Sponsor Novo Nordisk will cover CZK 100,000, but costs will likely be higher. The Council instructed the chairman to request that the co-organising Hemojunior cover half of the amount exceeding the sponsorship contribution.

2. V. Dolejš reported on the status of preparations for the Prague chapter of the World Day celebrations on 25 April at the terrace by the National Theatre. A programme directed by the main sponsor, Baxalta, has been prepared. The CSH information stand will be staffed by Petr Slunský. In connection with the celebrations, there is also a sales campaign of small souvenir items; at the association's suggestion, the merchandise was adjusted in favour of practicality, though not all comments are reflected in the final product range. The association's effort to organise a similar event in Brno did not succeed for financial reasons.

3. An invitation was received from Olomouc for a Patient Day on 27 May. The programme primarily covers chapters from haemato-oncology, similar to the meeting in Ostrava during the Pařízek Days there. V. Dolejš attended and noted that the organising patient organisations for haemato-oncological diseases deal with an entirely different programme than CSH. The latter is at a much higher organisational, professional, and social level. The practical benefit of the association's participation in a similar meeting in Olomouc is negligible, but the Council decided to support the efforts at least morally and by calling for member participation through the website. A decision on the personal attendance of a Council member will be made based on schedule availability in the following week.

4. The Council decided to transform the traditional printed Newsletter into a simpler bulletin summarising the most important information from the website. Frequency: twice a year. The aim is primarily to reduce costs, as the main information channel has for some time been the website itself.

5. M. Skořepa noted that not all the necessary physiotherapists are yet available for the adult rehabilitation stay in Víska. The Council will continue to take all steps to fill the gap.

Recorded by: V. Dolejš