News

MUDr. Zdeňka Vorlová has passed away

On the first day of October, the most prominent and significant figure of the Czech haemophilia community in the twentieth century left this world. The founder of specialised treatment in our country, a long-time physician and head of department at the Institute of Haematology and Blood Transfusion (UHKT) in Prague. She was 91 years old. Zdeňka Vorlová stood at the birth of modern care for haemophilia patients not only in our country; the system in Slovakia was also established following her model. She became a recognised expert on an international scale as well, well known in the professional circles of the EHC and WFH for her clear, sharp, direct, and always highly knowledgeable opinions. As head of the UHKT department in Prague, she contributed to its significant building modernisation, and under her leadership young doctors worked there who later became leading figures in the field of coagulation in our country.

It Is Important to Realise What Good the Current Situation Brings Me, Says Psychologist

The current situation is likely difficult for everyone, albeit for different people perhaps for different reasons. Individuals with serious chronic illnesses, including the bleeding disorder haemophilia, are often more afraid of contracting the new coronavirus than the general population. They may also experience anxiety regarding current changes in the health-economic system on which they are vitally dependent. How should one deal with fears and anxiety? How can one maintain optimism in the current circumstances while also keeping the routine and discipline essential for managing the disease? Clinical psychologist Mgr. Petra Bučková from Masaryk University and the University Hospital Brno answered these and many other questions.

Prague Will Light the Petřín Lookout Tower in Red

Every year on 17 April we observe World Hemophilia Day to raise awareness about hemophilia, von Willebrand disease, and other blood clotting disorders. This is its main purpose, because with increased awareness comes better diagnosis and access to treatment for thousands of people. The motto of this year's World Hemophilia Day is "Get + involved." Whether you are hemophilia patients yourselves, affected by von Willebrand disease, family members, a corporate partner, volunteer, or anyone who sympathizes with our Society, we want to encourage you to help raise awareness about the disease.

We invite you to an online seminar

Dear members, we are striving to keep you regularly informed about the COVID-19 epidemic. Since no in-person meetings are possible at this time, we have decided to organise a meeting in the virtual world together, in a so-called webinar. We have named it: What COVID-19 Means for Us Haemophilia Patients.

Specific measures and recommendations regarding the COVID-19 epidemic - updated 30 March 2020

Impact on patients with inherited bleeding disorders, such as haemophilia and von Willebrand disease. Due to the nationwide measures taken in connection with the COVID-19 epidemic, there are temporary changes to the organisation of healthcare and regular patient check-ups. We would like to inform you about the impact of the current situation on patients with bleeding disorders.

Medication Delivery to Homes of People with Hemophilia During Government-Imposed Restrictions

Dear supporters of the Czech Hemophilia Society, as we understand the complexity of these times, we want to help solve one of the problems you may be facing -- access to medication. Several of you have already expressed concerns about the availability of drugs and about travelling to your hemophilia centre. We have even heard of cases where such fears have led to the discontinuation of prophylaxis. As we have already assured you, there is a sufficient supply of medication in our country and no supply disruptions are currently expected. Interrupting your treatment regimen is therefore unwarranted and may, on the contrary, lead to much more serious complications. We would like to make access to medication easier and give you the option of obtaining it without having to leave the safety of your home. In cooperation with the management of the Czech National Hemophilia Program, we have contacted the centres with an offer to deliver medication from the centre to patients via courier. We are offering this service primarily as assistance to those who cannot visit their hemophilia centre in person because they belong to groups at risk of COVID-19 infection.

We Enjoyed Another Gala Evening at the Alcron

The event called the Gala Evening of the Czech Hemophilia Society and Hemojunior celebrated a lovely half-round anniversary. Perhaps even Katka Altmanova, who is the central figure behind the organisation of this event, did not believe it would see its fifth birthday. And given how well all the previous editions turned out, one can only wish her to reach the round anniversary. As the opening lines suggest, it was once again a very successful evening. There were more guests than originally anticipated, and the space where everything took place had to be reorganised. Those who were particularly looking forward to the delicacies of head chef Roman Paulus were greatly surprised to find no tables for the traditional buffets in the hall. They no longer fitted, and additional tables had to be added. But we did not miss out on the anticipated treats, as they were newly set up in the anteroom.

Summer camp moves to the Lužnice river valley

In the summer of 2020, the Summer Haemophilia Camp will take place towards the end of the holidays, from 15 to 29 August. The event is once again moving to a new location -- this time we have chosen the Lužnice Recreation Centre (https://www.rsluznice.cz/), situated near Tábor in South Bohemia. The facility will offer us comfortable cabins for accommodation, plenty of outdoor space on the riverbank, sufficient amenities, yet surrounded by nature. Vojtěch Horník remains the head counsellor, and the medical and physiotherapy aspects will be ensured by proven staff.

Adult Rehabilitation Retreat in the Třeboň Area

Next year we are once again changing the location of the adult rehabilitation retreat. We really liked Penzion Rokytenka, but once more the capacity was insufficient and we had to turn some applicants away. This time we will head to the Třeboň area and from 19 to 26 September 2020 we will visit Hotel Nežárka (https://www.hotel-nezarka.cz/). The hotel has its own swimming pool, which will again be reserved exclusively for us, and offers 20 rooms. That is 3 more than this year. We believe we will be able to accommodate all those interested in the retreat.