Link utili

Foto di Kelly Sikkema


International PNH Interest Group
IPIG is dedicated to enhancing and expanding professional knowledge about paroxysmal nocturnal hemoglobinuria (PNH) and related disorders in order to improve patient treatment and care.

Centro Nazionale Malattie Rare
Visita il sito per conoscere i progetti di ricerca, le guide per orientarsi tra norme e servizi e le Associazioni in Italia e all’estero.

The portal for rare diseases and orphan drugs
There is no disease so rare that it does not deserve attention. Rare diseases are rare, but rare disease patients are numerous.

Hematos Life
HematosLife is an umbrella website dedicated to European patients with PNH (Paroxysmal Nocturnal Hemoglobinuria), AA (Aplastic Anemia) and other rare blood disorders.

Association HPN FRANCE – Aplasie Médullaire
“HEMOGLOBINURIE PAROXYSTIQUE NOCTURNE” dite aussi Maladie de Marchiafava – Micheli & “APLASIE MEDULLAIRE IDIOPATHIQUE” vous pouvez nous aider en nous envoyant des timbres tous les dons font l’objet d’un reçu fiscal déductible des impots

Hematos Life – Nederland

PNH – Paroxysmale Nächtliche Hämoglobinurie
Im Dezember 2013 wurde die Stiftung Lichterzellen offiziell von der Bezirksregierung Köln als selbstständige Stiftung bürgerlichen Rechts anerkannt. Die Stiftung setzt sich für die Erforschung der seltenen Krankheiten PNH (Paroxysmale Nächtliche Hämoglobinurie) und AA (Aplastische Anämie) und die Unterstützung von Patienten und deren Angehörigen ein.

PNH Australia
Our aim is to support PNH patients and their loved ones to manage their condition positively by providing access to accurate information, practical resources and a support network.

Aplastic Anemia & Myelodysplasia – Canada
The Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) is a leading funder of research into bone marrow failure diseases in Canada.

Associazione STEM
Associazione per lo studio e il trattamento del malato ematologico

HPNE Spanish

The Aplastic Anemia and MDS International Foundation is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases.