18/04/2018
Sharing Knowledge and Experience Makes Us Stronger
ČSH
World Hemophilia Day has been commemorated every year since 1989 on 17 April -- the birthday of Frank Schnabel, founder of the World Federation of Hemophilia (WFH). Frank Schnabel (himself a person with haemophilia) founded it in 1963 at a meeting of representatives of six national haemophilia societies in Copenhagen. World Hemophilia Day provides haemophilia families and their loved ones with an opportunity to introduce the public to this disease, its challenges, and to share experiences with friends, colleagues, healthcare workers, neighbours, and others, and to find understanding and support. During World Hemophilia Day, people showing solidarity with haemophilia patients wear the colour red, and WFH member organisations join the global "Light It Up Red" project. Red is the symbol of this blood disorder.
This year's Hemophilia Day motto is: "Sharing Knowledge Makes Us Stronger."
The Czech Hemophilia Society has been organising events to raise public awareness of haemophilia on the occasion of World Hemophilia Day for many years. This year is no different -- education is slowly changing the perception of this disease. Knowledge and education are key factors for stronger support of people with congenital bleeding disorders. Mothers who give birth to a child with haemophilia often face condemnation from those around them. Women who are so-called carriers of haemophilia sometimes also encounter a lack of understanding from doctors and their surroundings. Due to a number of myths and stigmatisation, the disease has a significant impact on mental health. An important and main topic this year remains cooperation with emergency services and emergency departments. The Society, in cooperation with its sister organisation Hemojunior, devotes intensive attention to all these matters.
Czech Television 22 April 2018 https://www.ceskatelevize.cz/porady/1097181328-udalosti/218411000100422/video/615223
TV Barrandov 17 April 2018 https://www.barrandov.tv/video/124590-nase-zpravy-17-4-2018 */the report starts at 12:27/*
Medical Tribune CZhttps://www.tribune.cz/clanek/43193-hemofilie-diagnoza-nejpozdeji-do-druhych-narozenin
Czech Radio 17 April 2018 https://www.rozhlas.cz/radiozurnal/zaznamy/#/2018-04-17/13 /news at 1:00 PM/
New informational website
To better inform the general public, the company Roche, in cooperation with doctors, psychologists, and haemophilia patients themselves, created the educational website www.menimehemofilii.cz. It contains not only the latest findings about the origin, course, and treatment options for this disease, but also a section on Myths about haemophilia.
The new version of the website https://www.hemofilie.cz, operated by the company Shire, is also functional and provides information about bleeding disorders for the wider public.
