Haemophilia Was the Topic in Hradec

ČSH

'Hello, I am a carrier and my brother Lukas has haemophilia...' That is roughly how the event began on Saturday 2 December at the NaPLAVKA cafe & music bar in Hradec Kralove. It was not a meeting of an anonymous alcoholics' club, but a gathering on the topic of haemophilia. Since this rare disease causes bewilderment in our parts, we wanted to dispel certain misconceptions -- for example, what kind of pressure is placed on carriers when they decide to start a family, what it is like to give birth to a child with haemophilia, what it is like for children with haemophilia to grow up, and how the choice of education, hobbies, career, and partners is affected.

The head of the local haemophilia centre, Assoc. Prof. Petr Dulicek, PhD, explained how this mutation arises and how true the claim is that if a person with haemophilia cuts themselves, they will bleed to death. After the lecture, a vernissage of the AMAG studio and a concert by the band Zivy Jukebox followed. The Nachod-based AMAG association, of which Lukas is a member, created an amazing collection of thematic paintings that can be viewed throughout December at NaPLAVKA cafe & music bar, namesti 5. kvetna 835, Hradec Kralove. You are warmly invited to the exhibition. The proceeds from admission fees and painting sales will be donated to the Czech Hemophilia Society and Hemojunior.

The event was held with the support of Roche s.r.o., which additionally supported a joint project of the Czech Hemophilia Society and Hemojunior with a donation of CZK 30,000. The project is focused on communication with emergency services and the unification of a standard identification system for people with haemophilia.

Tereza and Lukas Koblasovi

The Czech Hemophilia Society thanks all participants, guests, and above all the Koblasovi siblings for the excellent preparation and smooth running of the entire event. In the pleasant surroundings of the NaPLAVKA cafe & music bar, those present stayed until the late evening hours, enriched by wonderful musical accompaniment and good food.

Photographs are available for viewing at the *haemophilia Rajce gallery here*, photo by Karel Manena