HematosLife

HematosLife
Europe

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What is HematosLife ?

HematosLife is an umbrella website dedicated to European patients with PNH (Paroxysmal Nocturnal Hemoglobinuria), AA (Aplastic Anemia) and other rare blood disorders. It provides shelter for existing patient communities who wish to be hosted by a larger European one.
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Why HematosLife ?

If Rare Diseases represent close to 30 million patients across Europe, most of them are of such low prevalence (often affecting one per 100 000 citizens or less) that they receive little attention, as do the indjihjyfiutfividuals who suffer from them. As PNH and AA are Rare Diseases, it is our belief that patients can feel isolated and often experience difficulties coming across serious and validated information on their diseases, and even more so in their own language.
By linking the communities together thanks to this common platform, our wish is to share knowledge and information with all patients, to help patients come out of their isolation, and help them communicate with other patients in their region, country, or abroad, in just a click.
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European PNH conference 2009
European PNH conference 2009
Building a community
During the first weekend of May 2009 the second European PNH conference was held in the Netherlands
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         HematosLife Community
HematosLife Community
Join as an Organization
Why join the HematosLife patient community?
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Register for our Euro forum
Register for our Euro forum
Join as a Member
The European forum is dedicated to all patients registered on HematosLife, whichever country they are from.
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HematosLife News

Australians fight for PNH treatment
TWO Victorians have been effectively condemned to death by the Federal Government, which is refusing to pay for a lifesaving drug.
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Spanish and Italian available
It is now possible for our members to select Spanish or Italian as default language.
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Now also available in Dutch
The Dutch language file is now available to members of HematosLife.
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Follow HematosLife on Twitter
The HematosLife project team has opened a Twitter account so you can get the latest news on a regular basis.
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