16/04/2019
We Observe World Hemophilia Day
ČSH
World Hemophilia Day falls on 17 April and its main goal is to raise public awareness about hemophilia and other related blood clotting disorders and to gain attention and understanding for them. Thanks to the efforts of patient organizations from around the world, access to care is gradually improving even for those who still remain without treatment. Its history dates back to 1989 and the World Federation of Hemophilia (WFH) chose 17 April in honour of the birthday of its founder Frank Schnabel. The WFH was founded in 1963 and is headquartered in Montreal, Canada, currently registering 140 member countries across all continents.
This year too, the world dresses in red
Traditionally, a number of world metropolises light up in red, and some people choose red as a clothing accessory. All in support of those who live with this disease. Symbolically, a red bracelet or a red bag can also be considered a form of support - these are part of the identification kit package that is still available. As of today, we have received nearly 150 orders. The Society processes them on an ongoing basis and subsequently ships them. Please note that delivery time may be more than one month - we always collect a larger number of orders and then process them in bulk.
The differences in access and level of treatment worldwide are enormous. While some know their diagnosis and receive treatment from an early age, millions of men, women, and children with blood clotting disorders remain without treatment. They face permanent consequences, pain, or even death. Today's campaigns help improve current treatment practices not only for hemophilia and make the world a healthier and better place to live.
Every year, the Czech Hemophilia Society contributes to this through its activities in cooperation with Hemojunior. They organize social events for members, press conferences, printed materials, and media appearances. This year is also very rich in these events. We will celebrate World Hemophilia Day together on Saturday 27 April at the historic Landek Museum in Ostrava. The variety of interesting places in the Czech Republic knows no bounds - we are meeting at the eleventh different venue. The registration deadline for Landek has already been reached, and about eighty of us should meet. As always, an interesting programme can be expected, this time with a mining theme.
More information at https://hemofilici.cz/index.php/cs/akce-seznam/16-akce5/366-hemofilici-miri-do-landeku
Vráž Spa Through the Eyes of Hemophilia Patients
In March, the spa premises in Vráž were decorated with photographs of hemophilia patients who regularly participate in rehabilitation stays there. They capture memories from previous years, including daily individual and group rehabilitation, prophylaxis, and educational lectures. The exhibition is accompanied by information about the disease, the importance of physiotherapy, and also includes a mention of the Czech Hemophilia Society and the Institute of Hematology and Blood Transfusion. The photographs can be viewed at the spa until the end of April.
More information at https://hemofilici.cz/index.php/cs/clanky/367-lazne-vraz-fotografickym-pohledem-hemofiliku
Hemophilia Treatment Past and Present, Identification Items for People with Blood Clotting Disorders, and a Medicomics Explaining Hemophilia to Children.
All of this was covered at a press conference in early April in Prague. With World Hemophilia Day approaching, we presented to journalists the joint project of the Society, paramedics, and emergency medicine, and introduced identification items that the Society and Hemojunior provide to all who request them. For hemophilia patients and people with von Willebrand disease alike.
A new publication called Medicomics helps explain things not only to children. It serves as an educational tool for the whole family, schools, and the public. The story features Miki and Roni - Microni for short - comic book heroes inhabiting the mysterious Microworld of the human body. They travel through the body and help fight enemy intruders. This inseparable duo helps children better understand the causes and consequences of the disease. In addition to the online version, printed copies of the comics can also be obtained from the Czech Hemophilia Society. You can request one atinfo@hemofilici.cz or from members of the CSH Board, and we will send the material to you cash on delivery. It is also available at hemophilia centers. Further information at: https://www.mojemedicina.cz
Where you can read about hemophilia:
Zdravotnický deník
Radiožurnál
https://program.rozhlas.cz/zaznamy#/radiozurnal/41/2019-04-09 - recording at time 16:09:51
Televize Prima
Czech Television, Studio 6 programme
https://www.ceskatelevize.cz/porady/1096902795-studio-6/219411010100417/video/688873
iRozhlas
AAzdraví
Zdravotnictví a medicína
https://zdravi.euro.cz/hemofiliky-nove-zdravotnici-poznaji-podle-naramku-nebo-prukazky/
Chamber of Paramedics of the Emergency Medical Services of the Czech Republic
We will gradually add more media coverage!