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 individuals 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.
Furthermore, building an on-line community will be a time consuming. Therefore, instead of having 27 patient groups spend money, energy and time in building 27 different websites for the same disease, HematosLife offers one and only platform, in which each patient group can insert chosen content, in its language, in total independence, just as if it were its own website, and this, for free.