PRA Health Sciences, Patient Advocates Form Rare Disease Advisory Committee

An industry first, the volunteer committee will evaluate unique patient needs and advise PRA on how clinical trials can be adapted for rare disease patients

Raleigh, N.C. – September 19, 2019 – PRA Health Sciences (NASDAQ: PRAH) announced today the formation of the PRA Rare Disease Advisory Committee (RDAC), a group of highly skilled and experienced patient advocates who will work toward improving the way that patients with rare diseases are integrated into the clinical development lifecycle.

The committee, the first of its kind in the contract research organization (CRO) industry, is an independent, autonomous volunteer group advising and working with PRA’s Center for Rare Diseases to better understand the ways in which clinical trials can be revolutionized to be more effective and accessible for these patients with unique challenges. The initial committee is composed of a group of experienced and talented individuals, all with a deep connection to the rare disease community:

  • Terry Jo Bichell, Founder/Director of COMBINEDBrain (Nashville, TN)
  • Kyle Bryant, Founder and Director of rideAtaxia and spokesperson for FARA (Exton, PA)
  • Tracy Dixon-Salazar, Director of Research & Strategy, LGS Foundation (Bohemia, NY)
  • Maureen McArthur Hart, Strategic Advisor, Global Genes (Aliso Viejo, CA)
  • Amy Price, Principal Consultant, Rarallel, LLC and Metachromatic Leukodystrophy Parent Advocate (Denver, CO)
  • Luke Rosen, Founder,, and VP, Patient Engagement at Ovid Therapeutics (New York, NY)
  • Andra Stratton, President & Co-Founder, Lipodystrophy United (Albuquerque, NM)

“Patients with rare diseases are sometimes overlooked in the development and implementation of clinical trials, and it’s our desire to make research more inclusive and sensitive to the needs of rare patients,” said Stratton. “Over the next year, our committee will be discussing many impactful ways to improve trials, and we will work with PRA to see those insights put into practice.”

Working alongside the RDAC is the international team of experts at PRA’s Center for Rare Diseases. For the past 7 years, the team has dedicated itself to groundbreaking research and the development of life-changing therapies specifically for patients with rare diseases. During this time, the Center has served more than 50,000 patients in over 300 clinical studies, leading to 18 approved drugs that fight rare diseases.

“Our work is centered on the patient – we want to make the clinical trial experience easier so they can focus on living a fuller life,” said Scott Schliebner, Senior Vice President, Center for Rare Diseases. “As the committee tackles important questions about the rare patient journey and their needs when participating in trials, PRA will be there to learn and collaborate with them.”

As a part of the RDAC’s work, PRA will also host an online community forum for rare disease patients, parents and advocates called The Rare Together Community. The platform connects members of the rare disease community together where they can discuss advocacy initiatives, challenge-solving ideas and ways to stay involved in the drug development process. RDAC committee members will serve as discussion leaders and moderators within the forum. Visit to join The Rare Together Community forum.

For more about PRA’s Center for Rare Diseases, visit To learn more about the Rare Disease Advisory Committee, visit


PRA (NASDAQ: PRAH) is a full-service global contract research organization, providing a broad range of product development and data solution services to pharmaceutical and biotechnology companies around the world. PRA’s integrated services include data management, statistical analysis, clinical trial management, and regulatory and drug development consulting. PRA’s global operations span more than 75 offices across North America, Europe, Asia, Latin America, South Africa, Australia, and the Middle East, and more than 16,400 employees. Since 2000, PRA has participated in more than 3,800 clinical trials. In addition, PRA has participated in the pivotal or supportive trials that led to U.S. Food and Drug Administration or international regulatory approval of more than 85 products. To learn more about PRA, please visit


Back to news