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New website about haemophilia |   |
What does the famous Monte Carlo casino, a computer gaming party and Star Wars have in common? To most people, probably not much. However, they are all part of three stories, which three young people with haemophilia chose to tell, when asked to explain their style of life and how it relates to their haemophilia.
The three stories are featured on a new Swedish website that was launched recently in connection with this year's edition of the annual Arosenius conference.
It is not every day a new web site exclusively dedicated to haemophilia launches, so it is worth examining what it has to offer. Most haemophilia sites fall into one of three categories. Firstly, there are the homepages of haemophilia patient associations. Then there are the web sites aimed at medical professionals which often focus on advances in treatment and care. Finally, there are the pharmaceutical industry's info sites about their treatment products. The new web site, hemofili.se, falls outside these categories. Although run by a pharmaceutical company, it does not advertise products.
Browsing through the site, you get the feeling that more than anything, the site will appeal to people who have come in close contact with haemophilia without having the condition themselves. There is something for the parents who learn that their newborn child is a just a little bit different than other children. There is something for the family who feel insecure about travelling abroad with their son, when he risks having a bleeding away from home and the regular doctor. And there is something for the young woman who would like to better understand how haemophilia affects her boyfriend.
That is not to say that people with haemophilia will not find something of interest. The traveller's checklist may be useful to refresh the memory when packing for a journey. And a friendly reminder of how to prepare for the regular check-ups at the treatment centre is something most of us could use.
It will be interesting to see how hemofili.se is received in Sweden and whether the site will be continuously updated and extended.
Maybe it is a little unfair to wait until the end to tell you that hemofili.se is exclusively in Swedish language. There are no immediate plans for an English language version. In any case, if your interest has been whetted, head on over to hemofili.se and check out the site.
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