Recordati Rare Diseases Sarl

Orphan Europe which recently became Recordati Rare Diseases (RRD), has always been a company deeply involved in the Porphyria field. The company is providing Human Hemin since the early 90’s, bringing, in different countries worldwide, the only therapeutic solution to treat Acute Hepatic Porphyria acute attacks. This treatment has a major impact on porphyria patient’s quality of life and brought an important change in the disease management of care. RRD has contributed, in a significant manner, to the creation of Ipnet and is an active member of the group. RRD supports the network in its different missions and initiatives including disease awareness, disease diagnosis or data collection. In fact, RRD has also supported the creation of a European Porphyria Registry to allow data collection and analysis, in order to better understand patient’s management and treatment. Finally, RRD is also very active at a local level in the different countries by increasing disease awareness (e.g. spreading the “think porphyria” campaign), by partnering with local patient associations and bringing support to physicians by ensuring the good use of human hemin therapy.