Associazione Italiana Emoglobinuria Parossistica Notturna (AIEPN)

AIEPN Onlus, the Italian Association for Paroxysmal Nocturnal Hemoglobinuria (EPN), was established on March 26, 2010, in Milan. The organization was founded by a group of patients, family members, and hematologists from across Italy, aiming to address the challenges posed by this rare blood disorder. AIEPN Onlus operates as a non-profit organization, with its headquarters located at the Hematology Unit of the Policlinico Hospital in Milan.

AIEPN Onlus exists to support individuals affected by Paroxysmal Nocturnal Hemoglobinuria (EPN) and their families. The organization aims to enhance awareness, advocate for patient rights, and promote research and treatment standards for EPN across Italy.

The organization specifically supports patients diagnosed with Paroxysmal Nocturnal Hemoglobinuria (EPN), a rare acquired blood disorder, and their families.

AIEPN Onlus engages in several key activities, including:

• Advocacy for patient rights and access to healthcare
• Educational initiatives to raise awareness about EPN
• Direct support programs for patients and their families
• Collaboration with healthcare institutions and research bodies

The organization provides various forms of assistance to patients and their families, such as:

• Information hotlines for patient inquiries
• Consultations and guidance on managing EPN
• Distribution of educational materials and resources
• Workshops and informational sessions for patients and caregivers

AIEPN Onlus has made significant contributions, including the establishment of the National EPN Registry in collaboration with the Istituto Superiore di Sanità. The organization has also funded important scientific studies and facilitated the organization of Patient’s Day events, fostering interaction between patients and medical professionals.