News

Minutes of the CSH Council Meeting 25.8.2012

Last weekend, the association Council met for its regular session. The Council convened in Dolní Bojanovice with the following members present: Martin Bohůn – Vice-Chairman, Petr Grim, Michal Skořepa, Jana Dvořáčková. CSH Chairman Vladimír Dolejš and Václav Tóth sent their apologies, both due to long-term health issues. The CSH Council has a quorum even with this number of attendees.

Ondrášův Dvůr Lived the Olympics

On a weekend in mid-July, counsellors, doctors, a nurse, physiotherapists, and most importantly 42 children gathered for the eighth time at the Beskid Mountains facility Ondrášův Dvůr to spend the traditional two weeks together at the summer hemophilia camp. This year's Olympic Games in London were a major event, and so our camp-wide game also had an Olympic theme. This was reflected in nearly every activity at the camp -- the counsellors represented the Olympic Committee, the children went to train at the training centre, health issues were handled by the sports physician, and carbohydrates, fats, and proteins were replenished by the athletes at the nutrition centre.

Why Not Take Advantage of the Opportunity?

Several months ago we drew attention to the possibility of setting up an account on the Czech National Hemophilia Programme registry. Although its advantages are obvious, so far only a very small number of clients have taken advantage of it. Why? Perhaps they are not properly informed, perhaps they were put off by the collapse of the similar IZIP system, or perhaps they are simply too comfortable. Yet it really only takes a few minutes of their time and the benefit is significant.

Michal Šťastný - Annual Award Laureate for 2012

This year, the Board has awarded the third annual society award.

Week-Long Reconditioning Stay in Lednice

Last week saw another edition of the reconditioning stay for adults. You can learn more about it from the contribution below. The organisers can confirm that the event was once again a success, and we thank the participants and especially the physiotherapists who took care of them. We have already reserved a date for 2013 -- 17 to 25 May. Those interested can therefore plan their holiday well in advance. On behalf of the organisers, Michal Skorepa looks forward to the next edition.

The Ministry Has Accommodated Us

Following the intervention of the society's board, the relevant departments of the Ministry of Health re-examined the draft Indication List for Spa Treatment and Rehabilitation Care for Adults, Children, and Adolescents. Certain changes were made. The Czech Hemophilia Society Board pointed out that the new list had dropped haemophilic arthropathy as a specifically listed indication, leaving only arthropathy in general. Compared to the previous indication list, the option of recommending spa care for hemophilia patients by a haematologist had also disappeared.

The Society Council Demands an Explanation from the Ministry

A letter was sent to the Ministry of Health today, in which the Society requests an explanation of changes in the new indication list of diseases for spa care. Everyone who applies for spa treatment must obtain a recommendation from a specialist physician. In the case of haemophilia patients and their haemophilic arthropathy, a recommendation from a haematology department was previously sufficient, as haemophilic arthropathy was explicitly listed. However, it has been removed from the latest version of the indication list, and only arthropathy in general remains. This could have serious consequences, particularly regarding the accessibility of spa treatment.

Photo Gallery: Parents of Young Hemophilia Patients Meet in Brno

Photo gallery from the meeting of parents of young hemophilia patients with medical staff, held on 21 April 2012 at Hotel Kozi horka in Brno. Parents met with physicians from the Paediatric Haematology Department of Brno University Hospital.

World Hemophilia Day Celebrations With Extraordinary Success

The fact that people with hemophilia gather around the world every year around 17 April is a long-standing tradition. However, the Czech Hemophilia Society, its sister organisation Hemojunior, with the support of pharmaceutical company Novo Nordisk, really hit the mark this time. A gathering was prepared for members and supporters on Saturday, 14 April, at the medieval Fortress Hummer near Prague.