Patient Advocacy

Patient Advisory Board

Overview

To highlight the importance of gaining insight from those who experience rare and orphan diseases, we established the Patient Advisory Board (PAB) Program in 2008 to enhance our partnership with and understanding of the patient community. This program seeks out any opportunity to examine the relationship between a patient and their treatment. They spend their time being purposeful advocates for the rare and orphan disease community.

PAB Membership

The purpose of a PAB is to bring together a group of informed individuals that represent a diversity of age and geography, and have a connection to the broader patient community beyond their own personal disease experience. Meetings typically are conducted twice yearly. Membership on an Amicus PAB is a two-year commitment and members are vetted through a nominating/application process.

PAB Scope

PAB members share their insights and knowledge on a range of topics including the design and implementation of clinical studies, patient advocacy activities, reimbursement programs and other topics. The scope may change as we seek different types of input throughout the drug development process.

PABs Making a Difference at Amicus

We take pride in working together with the patient community to use their insight and bring the best information, services and care possible to patients with rare diseases. With the help of the patient organizations and their leaders, PABs will continue to play an important role at Amicus and other companies in the future.

To learn more about the Patient Advisory Boards please contact: patientadvocacy@amicusrx.com.