Looking Back at 2022

Dear friends, supporters, and backers of the Czech Hemophilia Society,

It has been customary for you to find a printed newsletter in your mailboxes at this time of year. We have decided not to publish the newsletter for now and to disseminate information electronically instead. We would like to use the financial resources for more important events or publications.

We were finally able to meet many of you at our traditional events. Whether it was the spring celebration of World Hemophilia Day at Prague Zoo, the adult rehabilitation retreat, the summer hemophilia camp, or the meeting in Jihlava -- the intergenerational gathering and the women's meeting on blood clotting disorders. After two years, everything was in person again.

The year 2022 was very eventful in the life of our organisation. We experienced a number of successes but also setbacks. They serve as a driving force for our activities and motivate us for further days of work. The Council members met, whether through online platforms or in person. Some meetings were also attended by Hemojunior representatives and the Audit Committee.

It is a great pleasure for me that, thanks to all those involved, we finalised and published a brochure for women with blood clotting disorders. I would like to thank Katka Altmanová and Zuzana Ježková, who worked intensively on the final version and brought the whole matter to completion. Reprinting is currently underway and the brochure will subsequently be available to all centres and especially to you. The first presentation took place at the autumn meeting of women in Jihlava, where several copies were already available. We are also preparing the material in electronic form.

The organisation underwent a change in the accountant position. After several years, Mr Václav Tóth left the post of "organisation treasurer", and his successor became Mrs Alena Skořepová. Václav had announced his decision to step down in the past and confirmed this at last year's annual conference of the Czech Hemophilia Society. All financial affairs were handed over to Mrs Skořepová at the end of summer this year. I would like to highlight and appreciate the work of Mr Tóth, who performed the role of accountant for many years very conscientiously and with a willingness to always help. I am immensely glad that Václav stayed with us and supported us even in recent years. Incidentally, he had been considering leaving as early as 2017. Vašku, from the bottom of our hearts, thank you for everything you have done for the entire hemophilia community. You kept the accounting and financial affairs of the organisation very conscientiously, you supported our activities with your opinions and ideas, it was a pleasure to work with you -- with your accommodating approach and willingness to help. You will always remain our constant witness, and we believe that if needed, you will lend a hand at least with your advice and opinion. We all sincerely wish you that your zest for life and "fighting spirit" in all your difficulties, especially health-related ones, never leave you. Remember that our doors are always open to you, and whenever you want or need, you can turn to us. I would also like to thank Mrs Skořepová, who willingly took over the reins and will manage the organisation's accounting.

And therefore, who else should be the laureate of the annual award for 2022 than Mr Václav Tóth. The Council unanimously agreed and invited Václav to the autumn meeting, where we presented him with the award and shared a good lunch together. Thank you, Vašku!

The chairmen of both organisations, the Czech Hemophilia Society and Hemojunior, participated in audits of hemophilia centres. For the first time in history, they were invited to take part in this process. The results have already been sent to us by the Czech National Hemophilia Programme, and we will inform you once we have completed the overall summary. The audits were conducted across all centres that are part of the Czech National Hemophilia Programme. Both organisations were given the opportunity to ask questions and answer questions that were part of the audit. What is important is that the centres know about us, they promote our activities, and the clinics are equipped with information leaflets and the newsletter. We greatly appreciate the support we receive from the hemophilia centres. This also applies within the Czech National Hemophilia Programme meetings, where we have space to present our activities. Thanks to this, we can also collaborate on the preparation of our events, which are attended by new faces from hemophilia centres every year. In turn, we are also invited to events organised by hemophilia centres in some cases.

I would like to briefly mention the summer hemophilia camp, which took place at the RS Borovinka facility in the Vysočina region. I am very happy that a team of people was found and assembled who pull together and are eager to continue. They got to know each other over many years as children at hemophilia camps. And now, as adults, they have taken over the reins from Michal Bereň and are interested in dedicating themselves to the camp. They made a brilliant debut right in Borovinka. I would especially like to thank Dan Šimek, who was the main driving force from the beginning. He assembled a team of counsellors who understand each other, support one another, and dedicate themselves to the children with great commitment. The character of the camps remains the same; the programme resembles the usual camp customs. It perhaps only remains to add that nearly 40 children from across the entire country attended the camp this year. That is a sign that children still enjoy returning to the camps, and we want to offer them this opportunity next year as well, when we are returning to Zubří. The dates have been set for 9-21 July 2023, and the registration system will be launched in the coming days. Similarly, you will soon be able to register for the adult retreat, which will take place from 19-26 May 2023 in Bystré in the Vysočina region.

Our participation was also ensured at events organised by the World Federation of Hemophilia and the European Haemophilia Consortium. We took advantage of several -- the Meeting of Women with Blood Clotting Disorders in Basel, the WFH World Hemophilia Congress in Montreal, the EHC Annual Conference in Copenhagen, the Workshop on New Technologies in Hemophilia Treatment in Marseille, and the Summit for People with Hemophilia and Inhibitors in Barretstown, Ireland. We have already brought you reports from some of them through our website, or in person at events organised by the Czech Hemophilia Society and Hemojunior. We are preparing further articles, so please follow the organisation's website where you will find news and interesting developments. We are also preparing a translation of the gene therapy brochure recently published by the European Haemophilia Consortium. It can help you better understand the entire treatment process, including past studies and explanations of terminology.

We also spoke about our activities at several congresses, workshops, and in the media. And not only during the World Hemophilia Day period. I would mention, for example, the Educational Seminar for Non-Physician Healthcare Specialists Caring for People with Hemophilia in Pardubice, the Clinical Pharmacy Symposium in Mikulov, and at the European Haemophilia Consortium Congress in Copenhagen. There we presented our active involvement in helping people with hemophilia from Ukraine and current news from the life of our organisation. Unfortunately, during the year we also experienced disappointment, which definitively ended our efforts to host the World Hemophilia Congress in Prague in 2024. This does not change the fact that Prague should try to bid again at the next opportunity. In the final vote, Madrid beat Marseille, so everyone in the hemophilia world will meet in 2024 in the Spanish capital.

With the end of the year, we also need to plan for the future. The year 2023 is fast approaching, and we already know the dates of some events that may interest you. Since we have recently received a negative decision from the Ministry of Health regarding our grant applications, we will need to reconsider some events. But what should you not miss?

• Adult Hemophilia Rehabilitation Retreat -- Bystré in the Vysočina region (13-19 May)
• Summer Hemophilia Camp RS Jasenka near Nové Město na Moravě (9-21 July)
• Intergenerational Meeting of People with Hemophilia Jihlava (April 2023)
• Meeting of Women with Blood Clotting Disorders Jihlava (autumn 2023)

If the financial situation allows, we would also like to meet you at the World Hemophilia Day celebrations and offer the opportunity for a summer seaside stay in Greece:

• World Hemophilia Day, Pevnost poznání Olomouc (22 April)
• Rehabilitation Stay for People with Hemophilia -- Greece (1-8 July)

We will keep you informed about all events, whether by email or through our website/social media.

In conclusion, I would like to express my gratitude for your goodwill and support. I am glad that we were able to meet several times in person this year. I hope this will continue. I trust that the organisation has been a source of information, support, and understanding for you. I appreciate all of you who support us financially and materially. Without this generous help, we would not have been able to organise so many events at such a high standard. Thanks also to colleagues from the Council of the Czech Hemophilia Society and Hemojunior for their cooperation and all the work they do for all of us.

And what to wish for at Christmas and the New Year? I have a wish that is both a Christmas and a New Year's one. I feel that at Christmas, people can smile at each other more, be accommodating, kind. And that is something we could carry into the whole year. It costs us nothing.

I wish you holidays full of joy and pleasant moments with your loved ones. We continue to be with you and look forward to meeting in the coming year. May you be accompanied by strength and good health.

On behalf of the Czech Hemophilia Society

Martin Bohůn