Rare Daily Staff
Global clinical research organization Parexel said it entered a strategic partnership with Beijing Illness Challenge Foundation in China that aims to gain direct insights from rare disease patients to improve their access and experience in clinical trials.
“This collaboration is an extension of Parexel’s deep commitment to put patients at the heart of everything we do and to help reimagine the future of clinical development for rare disease patients,” said Vicky Hsu, corporate vice president, Greater China Region head and head of Asia/Pacific Biotech Operations for Parexel.
The Illness Challenge Fund (ICF) is the first public welfare foundation in Beijing to focus on the field of rare diseases and advocate for better social welfare coverage in this critical area. The organization works to solve urgent matters faced by the rare disease community, including medical treatment and rehabilitation, education, employment, and social inclusion.
“Our partnership with Parexel will allow us to further our mission to help address the challenges faced by the rare disease community,” said Yiou Wang, secretary-general, ICF. “Both of our organizations seek to help those affected by rare disease and to facilitate the opportunity to participate in clinical trials that could offer promise for rare disease patients and their families.”
Parexel has deep rare disease expertise, contributing to approximately 400 rare disease clinical studies over the past five years and 17 FDA approvals.
“We know rare diseases impact an estimated 300 million people worldwide,” said Clare Grace, chief patient officer for Parexel. “Our partnership with ICF provides a unique opportunity to learn from patients and to help us design patient-centric rare disease trials to transform rare disease research.”
Among the other key areas of collaboration, Parexel and ICF aim to empower patient advocacy groups and patients by jointly planning and conducting rare disease patient community support and education programs, improving patient access to clinical studies, and increasing patient input during clinical trials.
Photo: Vicky Hsu, corporate vice president, Greater China Region head and head of Asia/Pacific Biotech Operations for Parexel