Agenda

Pyruvate Kinase Defficit: 1est Patient's Day

May 16, 2015

Milano, Italy

Organized by:

Associazione STEM Onlus

Location:

Fondazione IRCCS Ca’ Granda
Ospedale Maggiore Policlinico
Aula Polo Scientifico
Via F. Sforza, 35 Milano

Since 2008 the Association STEM Onlus has already organized several meetings between doctors, patients and their families, called "Patients'day" dedicated to rare diseases, such as paroxysmal nocturnal hemoglobinuria, hemolytic anemias congenital defect of the diaphragm and enzymes of the red blood cell and autoimmune forms. The initiatives have seen an active participation and felt, with exchange of knowledge and experiences regarding the difficulties of living with a rare disease, as well as the birth of the Italian Association of patients with paroxysmal nocturnal hemoglobinuria (AIEPN).

With this spirit we organize the Patient's day dedicated to pyruvate kinase deficiency (PKD), a disease little known and difficult diagnostic picture, for which today there are promising therapeutic advances.

The purpose of the meeting is then spread knowledge and illustrate the new scientific and therapeutic opportunities available, but also foster dialogue "informal" between doctors and patients and creating a network of support for spontaneous and among patients with rare disease

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