Acute Porphyria Patients
?Kantar, an independent research agency, is collaborating with sponsoring company Alnylam Pharmaceuticals, and with the assistance of the patient advocacy groups the American Porphyria Foundation, the Global Porphyria Advocacy Coalition and the International Porphyria Patient Network to conduct research on Acute Hepatic Porphyria (AHP) also known as Acute Porphyria (AIP, HCP, VP, ADP).
In this context, we along with the American Porphyria Foundation invite you to participate in the Porphyria Worldwide Patient Experience Research (POWER) study. Your input is critical to increasing awareness and understanding of AHP and the needs of patients living with this condition.
Purpose of the research
The main objective of the research is to raise awareness on the impact of AHP on patients’ lives and better understand how disease manifestations or changes over time impact patients’ lives.