Minutes of the CSH Council Session February 16-17, 2019

Minutes of the CSH Council Session on February 16 and 17, 2019 in Vacenovice. Present: Jana Kalabova, Martin Bohun, Michal Skorepa, Martin Zidek, Lukas Koblasa.

The Council discussed the following items:

Membership database audit - the Council decided to remove 61 members due to non-compliance with regular membership conditions (long-term non-payment of membership fees). The current membership count after the audit is 209. The membership numbers affected by removal from the database are: 22, 32, 46, 53, 92, 102, 123, 149, 150, 215, 216, 219, 259, 269, 285, 315, 347, 348, 357, 365, 370, 376, 378, 399, 405, 406, 425, 426, 431, 432, 436, 474, 478, 511, 532, 554, 587, 601, 612, 615, 616, 638, 641, 650, 658, 671, 672, 704, 706, 707, 713, 714, 715, 717, 720, 721, 732, 736, 737, 740, 741
New membership certificates for CSH will only be sent after the membership fee has been credited to the Society's account (this confirms the new member's full membership). Martin Zidek was assigned the task of sending certificates and information to new members.
The Council decided to contact and inform hemophilia patients and persons with type III von Willebrand disease by personal letter in cooperation with hemophilia treatment centers. The Society will prepare an informational letter and ensure distribution in cooperation with the centers. /M. Bohun; J. Kalabova/
Update and revision of contracts regarding loaned CPM (continuous passive motion) devices /UHKT, Brno University Hospital - Bohunice, Hradec Kralove University Hospital/. /M. Skorepa, M. Bohun/
Applications for grants for 2019 have been submitted to the Ministry of Health. This year, for the first time, also in electronic form. Due to the late grant announcement by the Ministry, applications can only be made for projects implemented in the second half of 2019. Any grant received therefore cannot be used for the adult rehabilitation stay in Rokytnice, which we plan for May 2019. The Society must secure financing from other sources. Applications were submitted for the following areas:
- G/1 Rehabilitation and educational stays, requested grant CZK 147,000
- G/3 Editorial activity, requested grant CZK 87,500
- G/5 Organizational-administrative services, requested grant CZK 61,830
The Society sent the Ministry of Health the financial settlement of non-investment grants from the state budget for 2018 under the grant program "Grant Support Program" and the accounting of actual costs and evaluation of project benefit. /V. Toth and M. Bohun/
Identifiers for persons with blood coagulation disorders - the second round of orders has been dispatched. The distribution system has been changed - no longer cash on delivery but prepaid postage and packaging; after receipt of the amount in the CSH account, identifiers are sent to the recipient. The deadline for the third round is February 28, after which those concerned will receive an email with payment instructions. Thanks to the Beren couple for help with distribution.
By March, there should already be a clear position regarding the Interdisciplinary Guidelines for the Administration of Coagulation Factor in Hemophilia Patients in Pre-Hospital Emergency Care, as part of the project with emergency medicine specialists.
The Society has some new materials and publications available (Handbooks not only for children and adults with hemophilia; Calendar from hemophilia camps in Zubri and Belec; Didactic hemophilia board game; First volume of the Medikomiks - Hemophilia). All of these, including the original book publications, can be ordered through the Society's website.
A brochure by the European Haemophilia Consortium about innovations in hemophilia treatment, including extended half-life concentrates (EHL), is in production. A brochure of patient stories from the lives of Czech hemophilia patients and their loved ones is also planned.
Summer Hemophilia Camp (SHC) - the previous venue, RS Zubri near Nove Mesto na Morave, remains closed for technical reasons until further notice. The Society is intensively searching for a replacement; negotiations are underway for Safrankuv Mlyn near Tisnov, with an available date of July 28 - August 8 (Sunday to Thursday - 12 days). Financing - the accommodation fee for hemophilia/von Willebrand patients and their siblings remains unchanged even in case of price increases. Others will pay the actual accommodation costs (friends, etc.).
The adult hemophilia rehabilitation stay in Rokytnice nad Jizerou is already fully booked. The Council discussed the possibility of inviting specialists (hematologist, orthopedist - mobile ultrasound). Consider whether to look for a larger-capacity facility next year to accommodate as many interested participants as possible.
In early February, the 12th Congress of the European Association for Haemophilia and Allied Disorders (EAHAD) was held in Prague, attended by some 2,500 experts from around the world. Minister of Health Adam Vojtech took patronage of the congress and participated in the opening press conference together with EAHAD President Professor Michael Makris, Congress President Jan Blatny, and our Society Chairman Martin Bohun.
Hemophilia C - information to be obtained from WFH website or other international sources. Add information to the website. /L. Koblasa/
WFH announced the candidacy process for hosting the World Congress in 2024. The Society Council approved negotiations with agencies and pursuing this candidacy. /M. Bohun/
Informational leaflets about identifiers will be delivered to UHKT. /M. Skorepa/
Seaside stay for hemophilia patients in 2020. The Council decided to organize this stay. It would be a week outside the summer holidays, preferably June or September, location Greece. We will try to provide preliminary information during the first half of 2019. Capacity approximately 40 persons. Discounted price for members - hemophilia patients (CZK 5,000). We will try to arrange the presence of a physiotherapist or nurse for the stay. /M. Skorepa/
Schedule of events for 2019:
- 2nd kinesiotaping workshop on April 6 at the outpatient rehabilitation department of Plzen University Hospital, capacity up to 15 people.
- World Hemophilia Day - closest to agreement is the Landek Mining Museum in Ostrava, date Saturday April 27. The Society is working intensively on the program; we will publish more information on the website in early March.
- Adult hemophilia rehabilitation stay at Hotel Rokytenka in the Orlicke Mountains /May 18-25/
- Summer Hemophilia Camp at RS Safrankuv Mlyn in the Vysocina region /July 28 - August 8/
- Intergenerational meeting "Together about Hemophilia" at EA Business Hotel Jihlava /November 15-17, 2019/
- CSH Conference - planned during the Intergenerational Meeting in Jihlava
- Regional meeting of hemophilia patients in the Liberec Region - autumn 2019 /date to be specified/
- Meeting of hemophilia patients with inhibitors, Barretstown - Ireland /November 28 - December 1/
As part of the activities of the Office of the Public Defender of Rights, a representative of the Department for Protection of the Rights of Persons with Disabilities, Mgr. Havlova, contacted the Society to raise awareness about hemophilia as part of World Hemophilia Day. /M. Bohun/
A press conference is planned in cooperation with ROCHE for World Hemophilia Day.
Together with the Garmedis agency, the Society and Hemojunior discussed the possibility of creating an informational video about hemophilia that could run either during prime TV broadcasting or as online advertisements. Garmedis promised to create a proposal and overall budget. Further cooperation with Meditorial in connection with the hemofilie.cz website was also discussed.
Program for the intergenerational meeting in Jihlava. Maintain the meeting format, probably two days again, also focus on the possibility of individual consultations. Some topics were discussed:
- patient-doctor relationship,
- bureau of insurers (travel),
- psychological area (aging), siblings of hemophilia patients
Learn more about the system and device enabling localization of subcutaneous veins for easier factor administration, the so-called Vein Viewer. Try to find the distributor/manufacturer for the Czech Republic. /Council members/
EHC is organizing the first annual meeting for women with blood coagulation disorders and carriers in Frankfurt on May 24-26. The Society Council discussed and approved sending Tereza Rihova to this event; she agreed to participate. A grant for funding the participation has been submitted.
The next meeting of the Czech National Hemophilia Program will take place during the Parizek Days in Ostrava on March 6 at 4:00 PM. The Society will have its representative at the meeting.
The Society is working intensively on a new design for the website; Martin Zidek has already presented the basic design.
At the end of 2018, another meeting of hemophilia patients with inhibitors took place in Barretstown, Ireland. Martin Ipser represented the Society at this event; we will bring a report on the event on our website shortly and in the next issue of the Hemophilia Newsletter.
The next CSH Council meeting is planned during the adult stay in Rokytnice in the Orlicke Mountains /May 18-25/

Recorded by: M. Bohun Verified by: J. Kalabova, M. Skorepa, M. Zidek, L. Koblasa