PRA is proud to join forces with a group of highly skilled and experienced patient advocates — collectively working towards improving the way patients with rare diseases are integrated into the clinical development lifecycle.
About the Committee
The Rare Diseases Advisory Committee (RDAC) is an independent and autonomous volunteer group that advises and works with PRA’s Center for Rare Diseases. Together they work to better understand the ways in which clinical trials can be revolutionized to be more effective and accessible for these patients and their unique challenges.
The inaugural committee members are a group comprised of experienced and talented individuals, all with a deep connection to the rare diseases community.
About the Collaboration
Working alongside the RDAC is the international team of experts at PRA’s Center for Rare Diseases. This team has dedicated itself to groundbreaking research and the development of life-changing therapies — specifically for patients with rare diseases. Since 2012, the Center has served more than 50,000 patients in over 300 clinical studies, leading to 18 approved drugs that fight rare diseases.
As part of this collaboration, PRA will host an online community forum for rare disease patients, parents, and advocates called The Rare Together Community. The goal of this platform is to connect members of the rare community more efficiently, enabling them to discuss advocacy initiatives, challenge-solving ideas, and ways to stay involved in the drug development process. That’s just for starters.
Download our Guiding Principles for Interactions with Rare Disease Patient Advocacy OrganizationsYou may also be interested in:
Blog
Discovering the People Behind the Science: Dr. Aimee Payne
Blog
A Critical Success Factor in Rare Disease Clinical Research: Patient Advocacy Collaboration
In most public sectors, understanding the end user’s perspective and building out a product strategy around it is nothing short of dogma. However, in…
Blog