News

Peaceful Christmas and a Happy New Year 2019

Dear members and non-members of the Czech Hemophilia Society. We wish you and your loved ones a joyful and peaceful Christmas season and for the new year 2019 abundant health, plenty of strength, and the courage to enjoy every little thing and to successfully overcome all difficulties. Thank you for your cooperation and our gatherings together, which we firmly believe will continue in the coming year.

Adult Rehabilitation Retreat 2019 in a New Setting

After three years at Penzion Ohrada, we have decided on a change. This time we will head to the Orlické Hory mountains, specifically to Hotel Rokytenka in Rokytnice v Orlických Horách. Once again, it is a property in a beautiful setting that will be reserved exclusively for us. A swimming pool, whirlpool, sauna, games room, common room, restaurant lounge, outdoor area including seating and a children's playground will all be available. More information about the property can be found at www.rokytenka.cz. The hotel is just a short walk to the town square of this small town of two thousand inhabitants. There are many interesting places nearby for excursions.

What Is Being Discussed?

The European Haemophilia Consortium organised a workshop in Sofia on the topic of modern technologies and new therapies. The number of participants was limited, and the organisers placed great emphasis on questions from the audience, which consisted mainly of physicians and patient organisation representatives. The opening covered an overview of all ongoing clinical studies. Currently, several approaches to the treatment of hemophilia A and B exist.

The 4th Gala Evening Is Just Around the Corner — Haemophilia Patients Will Meet in January

Dear friends and members, there are four seasons: spring, summer, autumn, winter — with haemophilia patients at the Alcron, it's always a great time. And in 2019, there will also be four editions of the event commonly known as the "haemo-ball." Allow us to invite you on behalf of both organizations to the 4th Gala Evening of the Czech Hemophilia Society and Hemojunior, which will take place on Saturday, January 12, 2019, at the Alcron Radisson Blu Hotel in Prague. The programme begins at 18:00, with admission to the hall from 17:15.

A Law That Concerns Us

The Public Health Insurance Act No. 48/1997 Coll. has undergone a series of amendments over more than twenty years. The Ministry of Health is now preparing a very significant change affecting people with hemophilia, specifically Section 16. It is very brief — (1) The relevant health insurance company shall, in exceptional cases, cover healthcare services not otherwise covered by the health insurance company, if the provision of such healthcare services is the only option in terms of the insured person's health condition. These three lines contain a very important provision that affects medications that are not commonly available on the market — that is, those not yet approved and without a set reimbursement. The reimbursement is determined by the State Institute for Drug Control, and both manufacturers and payers — i.e. health insurance companies — must comply with it. If such a medicine is not on the relevant list yet is urgently needed, the aforementioned Section 16 applies. This therefore also covers so-called innovative treatment — the administration of new medicinal products that are not yet available on the Czech market.

Vladimir Dolejs - Laureate of the CSH Annual Award 2018

The laureate of the 2018 annual award is our long-standing member who served as a council member for twelve years, including seven years as chairman, Mr Vladimir Dolejs.

European Inhibitor Network

The European Inhibitor Network (EIN) is a programme of the European Haemophilia Consortium that is dedicated to people with hemophilia and inhibitors, their families, and healthcare professionals from across Europe. Hemophilia is a rare disease, but its combination with inhibitors brings a host of additional complications. Fortunately, the number of people with hemophilia and inhibitors in Europe is low, but it still carries a certain degree of stress and concern -- concern about isolation, inadequate treatment, and the development of social barriers due to limited mobility and other difficulties.

All Generations of Haemophilia Patients Gathered in Jihlava

The intergenerational meeting of haemophilia patients and their closest ones holds a special place in our calendar. Nobody doubted that interest would be great again this year. The topics clearly invited it. Nearly one hundred and fifty participants filled the pleasant premises of the EA Business Hotel in Jihlava to learn about the latest developments in not only the haemophilia world. This time, the Society also made room for people with von Willebrand disease. Unfortunately, interest from members with this condition was almost nil. And so the entire programme focused on haemophilia-related topics.

Identification Items for People with Bleeding Disorders

One of the main tasks of the association was to develop standardized emergency medicine procedures for hemophilia and other bleeding disorders and proposals for corresponding identification items. We have fulfilled these requirements. The Czech Hemophilia Society and Hemojunior, in cooperation with the Emergency Medical Service, have prepared a set of special identification items for all individuals with blood clotting disorders that can save lives.