What is HematosLife?
HematosLife is an patient driven 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. HematosLife also provides shelter for patients who do not yet belong to a patient organization, but who wish to start their own independent group.
HematosLife aims to bring all these patient groups together to form the first PNH & AA European community platform, enabling each patient group to share experiences not only within their national patient groups, but also with other European ones.
There are two main functions to HematosLife:
- A global European platform where can be found information on the diseases, a European Forum enabling all members across Europe to communicate and latest news.
- Access to national European AA & PNH patient organizations
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 can often be tricky, costly and 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.
How can HematosLife help our patient-organization?
- HematosLife provides a free technical structure to host your patient group website
- HematosLife enables to quickly and simply communicate with patients in your country and from around the whole of Europe
- HematosLife enables to obtain information on PNH and AA in whatever language you choose and in whatever country you select.