News: workshop

Jihlava Intergenerational Meeting — Not Just About News in Hemophilia Treatment

In November, the seventh meeting of the Czech Hemophilia Society and Hemojunior took place at the EA Business Hotel in Jihlava. The pleasant premises provided a suitable venue for gaining new enriching knowledge and social gatherings for exchanging experiences. The professional programme met our expectations as always — both the Friday lecture on lower limb axis correction by orthopaedist Petr Teyssler, accompanied by numerous photographs, and the personal experiences of young hemophilia patient Lovre Šuta with the myPKFIT mobile application received positive feedback. The varied programme continued with Saturday's thought-provoking lecture by psychologist Petra Bučková and physiotherapist Marie Katzerová on pain in coagulation disorders, the witty and encouraging talk by another psychologist David Bystrický, and last but not least, new information on hemophilia treatment options from haematologist Jan Blatný.

Hemophilia in Jihlava Again This Year

We would like to inform members of the Czech Hemophilia Society and Hemojunior that the next intergenerational meeting of people with hemophilia and their loved ones will take place in November, again in Jihlava. For several years, both associations have been organising generational meetings aimed at helping not only members, but everyone dealing with hemophilia and von Willebrand disease, to navigate all related issues. And also their partners, parents, friends -- in short, anyone who is interested. Everything is being prepared for 15-17 November at the EA Business Hotel. The main programme is traditionally scheduled for Saturday, but already on Friday evening we will be able to learn a number of new developments in the fields of orthopaedics and haematology. Conference rooms, salons for group and individual meetings, demonstrations of individual rehabilitation, proper factor administration and vein care, and many other interesting activities will be available. Professional childcare will be provided for small children if needed.

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.

Together This Time in Jihlava

Three editions of the traditional "Together about Haemophilia" meeting took place at one location, and then we began moving to a different venue each year. This time, we will meet on 14-16 September 2018 in Jihlava. We will be hosted by the local EA Business Hotel. Once again, we decided to dedicate an entire weekend to this event and give you the opportunity to spend more time together. The programme will be even more focused on so-called workshops, i.e. discussions on individual topics in smaller groups, allowing for mutual sharing of knowledge and experience.

The Regional Workshop Project Reports Another First

It started first on Saturday 14 April with a rehabilitation-themed seminar in Plzeň, and three days later, on World Hemophilia Day, we continued in Hradec Králové. At the close of April, which has traditionally belonged to hemophilia patients, we would like to look back on these two workshops. And with whom else but the participants themselves? Two of them shared their impressions with us, and we present their observations in the following lines.

First Regional Meeting of Haemophilia Patients in the Hradec Králové Region

In a short period of time, we would like to invite you once again to the capital of the Hradec Králové Region. Although haemophilia was discussed in Hradec Králové recently, this time we are meeting for a different reason — the next instalment of our regional workshops. We would like to invite not only adult haemophilia patients with companions, but also paediatric haemophilia patients accompanied by their parents (or parents alone). Participants will have the opportunity to meet specialists from the local haemophilia centre who help haemophilia patients address their health issues.

Regional Workshop Heads to Brno for the Second Time

In cooperation with the haemophilia centre at Brno University Hospital and the company Shire, we are preparing the 2nd regional meeting of colleagues in the South Moravian Region. The first meeting took place in Brno as early as 2011, and now we would like to follow up. Our aim is to help all haemophilia patients, their family members, and partners in managing the disease.

You Can Never Have Enough Information

Over the past five years, autumn has become a time when hemophilia patients of all age groups share moments together at the traditional intergenerational meeting. This year was no exception. The second October weekend brought all participants together in the largest conference space at the Top Hotel in Prague. For young and old alike, it was an adventure navigating the local labyrinth of corridors. No one got lost, however, and nearly one hundred and fifty participants could enjoy shared moments with friends and renowned experts.

Together About Haemophilia -- Again

We cordially invite members of the Society and Hemojunior to the next edition of the intergenerational gathering of haemophilia patients and their loved ones on Friday and Saturday, 13 and 14 October. The fifth annual edition of the traditional "Together About Haemophilia" meeting will take place this time at the Top Hotel in Prague (https://www.tophotel.cz), once again in cooperation with Shire. After a year, therefore, a move from nearby Čestlice -- unfortunately unwanted, but for certain reasons unavoidable. The complete professional programme is concentrated on Saturday, with an expected start at 9:00 and finish at 16:00. However, you can arrive a day earlier; accommodation will be available at the hotel. Non-members may also attend in any number; only the participation fee differs.

Notes from a participant

Notes from a participant of another meeting of Northern Moravian haemophilia patients in Ostrava. The centre there is particularly active, cooperates effectively with the association, and so we are happy to give the floor to one of the satisfied guests. The second Haemophilia Day in Ostrava took place once again in the beautiful setting of the Imperial Hotel, where considerably more of us gathered than last time. After a coffee and a small refreshment, we sat down for the professional lectures.

Together again, albeit elsewhere

Many members and supporters of the association have grown accustomed to meeting each autumn at the "Together about Haemophilia" event. In recent years, everything took place at the Jezerka Hotel in Eastern Bohemia, but variety is the spice of life. In cooperation with long-standing partner Shire (formerly Baxalta, before that Baxter), CSH prepared a programme at a hotel by the Aquacentre in Čestlice – just outside Prague, right by the D1 motorway. The programme itself can hardly be reinvented; it is more about what fills the familiar framework. There is always an effort at renewal, but the foundation remains – delivering the latest information needed by everyone, keeping them up to date with developments and the outlook for care, and last but not least, answering as many questions as possible from participants.

Together again

Where and about what? About haemophilia again, as in the three previous autumns, but this time not at Hotel Jezerka near Chrudim, but at Aquapark Čestlice near Prague, practically right on the D1 motorway. Mark the date 21 to 23 October 2016! The foundation is once again the Saturday professional programme, with experts from several fields bringing the latest news. Physicians -- haematologists Peter Salaj from UHKT Prague and Jan Blatný from the Children's Hospital Brno, orthopaedist Petr Teyssler, dentist Eva Zapletalová, physiotherapist Marie Katzerová, and social affairs specialist Marcela Štáfová. Regular attendees already know them all. Specialists in psychology and cardiology are also being negotiated, and on Friday evening there will be an opportunity to meet hepatologist Petr Urbánek, with whom we have been cooperating for several years. An especially interesting topic at a time when new developments in the treatment of hepatitis C are being loudly discussed.

Advanced School of Haemophilia

The regional seminars for patients registered at individual centres have reached Prague. Invitations were sent to those who attend the Institute of Haematology and Blood Transfusion (ÚHKT) and the children's centre at Motol. Once again with the support of Baxalta (formerly Baxter), they gathered at the Andel's Hotel in Smíchov, near the Anděl metro station. The programme remained traditional, but the content turned out to be somewhat unconventional. Although the format was also slightly different - this time participants did not have to give up a weekend, but rather a Wednesday afternoon. This proved to be a good choice, as not everyone - whether invited experts or attendees - is willing to sacrifice an entire day off.

Regional Seminar in Prague

The Czech Hemophilia Society, in cooperation with the haemophilia centres at ÚHKT and Motol University Hospital and the company Baxalta, cordially invites you to a regional seminar. Everything is set for 4 May 2016, 3:00 PM – 7:00 PM, at the Andel's Hotel, Stroupežnického 21, Prague 5. A conference room, several small salons for individual meetings, a demonstration of individual rehabilitation, and many other interesting items will be available. Information will be presented by leading experts, including haematologists MUDr. Peter Salaj from ÚHKT Prague, MUDr. Vladimír Komrska, CSc. from paediatric haematology at Motol, specialised orthopaedist MUDr. Petr Teyssler, PhD., physiotherapist specialising in haemophilia rehabilitation Martin Mužíček, DiS, social affairs specialist Mgr. Marcela Štáfová for specific cases, and others.

Meeting of Generations for the Third Time

The autumn-coloured surroundings of Hotel Jezerka welcomed participants to another intergenerational meeting entitled "We Are Here for You." Once again, we were met with a warm reception and top-level services. The dry summer caused the water level of the Seč Reservoir to drop dramatically, but the same cannot be said about the number of participants. Although the attendance did not exceed last year's record, interest was again strong. Around eighty participants of all age groups could look forward to a range of new information from experts in several specialisations, practical demonstrations and exercises related to the previous lectures, wellness, and above all, different generations of those who share something in common with haemophilia met here.

When Autumn Asks

...what the Society was doing in spring and summer, we can answer that, for example, it was preparing the third edition of the gathering "We Are Here for You." Yes, it is now confirmed — Hotel Jezerka in Sec u Chrudimi awaits Society guests on October 23 and 24. The welcoming and elegant setting of the recreational hotel has already earned recognition over the past two editions. Thanks to the Baxter company, several dozen members of CSH and Hemojunior and their supporters gather here. They can look forward to a range of new information from specialists in several fields, practical demonstrations and exercises on the topics of the preceding lectures, a wellness environment, and above all, the opportunity for different generations of those connected to haemophilia to meet again.

A Slightly Rippled Surface on the South Bohemian Pond

In terms of the life of the haemophilia community, one of the quietest regions in the Czech Republic is precisely the South Bohemian one. There are no activities here, and very few Society members come from this area. This is one of the reasons why the Society directed another instalment of its regional workshops here, with the aim of helping local colleagues. It assembled the usual team of experts and reserved a meeting at the Hotel Podhrad in Hluboka nad Vltavou for as broad an audience as possible. Two direct participants wish to share their impressions.

Invitation for All South Bohemians

For several years now, regional seminars have been organized by the Society with the aim of helping everyone dealing with hemophilia - not just members, but all who are affected by hemophilia - to navigate everything related to it. And also their partners, parents, friends - in short, anyone who is interested. In April, the meeting will take place in Hluboká nad Vltavou.

How We Met in Ostrava

The last major gathering of this year took place in northern Moravia, and the regional workshop attracted a truly large number of participants. Among them were two young members of the association who described everything they witnessed as follows. The original plan to use the facilities and services of the Klimkovice spa fell through, so we headed to the pleasant setting of the Imperial Hotel. Everything was organized in cooperation with the Hematology Department of Ostrava University Hospital and Baxter. Despite initial concerns about low registration numbers, what was probably the highest number of participants in the entire history of workshops attended.

Hemophilia Workshop with Ostrava University Hospital

In cooperation with the Hemophilia Center at Ostrava University Hospital and Baxter, we are organizing a regional meeting for colleagues in the Moravian-Silesian Region. We aim to help all hemophilia patients, their family members, and partners in managing their condition. Similar events have already been successfully held in the South Moravian, Liberec, and South Bohemian regions.

We Were Cheerful and Serious...

...but above all, for you. That was the name of the second edition of the gathering for all interested parties at the very nice Hotel Jezerka near Sec in eastern Bohemia. Last year the bar was set quite high, and this year — according to participant feedback — it was maintained. Defending is always far more difficult than starting. Once again, we can call the event a "meeting of generations." The age range covered virtually all categories and brought something for everyone. Again with an emphasis on the usefulness of the information provided, complemented by pleasant surroundings, an inviting wellness area, and hospitable treatment.

We are here for you again

Following last year's successful gathering called "We Are Here for You", we are preparing another edition this year too. Again in the beautiful surroundings of Hotel Jezerka in the Železné hory Protected Landscape Area by the Seč Reservoir, again with a rich programme. The only difference is that we will extend it by one day. We will meet as early as Friday morning, 19 September, and leave Jezerka on Sunday, 21 September.

A Sunny Haemophilia Weekend

The second November weekend belonged to everyone who wanted to learn about new developments in haemophilia treatment -- above all, to obtain information about current changes in social affairs, to discover the importance of psychological counselling in managing this disease, or to meet friends and exchange experiences with each other.

We Are Here for You

In other words, a discussion about everything that interests you in connection with haemophilia. We offer you another opportunity to make contact not only with fellow patients with the same condition, but also with specialists. The lack of information and contact with people in a similar situation is keenly felt. Family members, partners, and friends of haemophilia patients who want to be a source of support for their loved ones feel this strongly as well. That is why we consider every personal meeting a significant benefit for members and for the society itself.

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.

Second Regional Workshop at Kundratice Spa

A Saturday full of information and good spirits - that was the second regional workshop. Sunny 24 September was marked by another round of regional workshops called "Together About Haemophilia", organised for its members by the association with the financial support of Bayer. This time in the picturesque Kundratice Spa in the Liberec Region.

The First Swallow Flew from Brno

The new programme of regional workshops for adults began yesterday. In Brno, a dozen South Moravian association members gathered at the Avanti Hotel to take advantage of the new opportunities. Everything was made possible thanks to Bayer, which covers all costs of the regional workshops. The four-star hotel in almost the very centre of Brno was the right choice. Participants had two large salons at their disposal - one for lectures and discussion, the other for rehabilitation. In addition, there was a sauna and whirlpool in the relaxation centre.