Ahead of Rare Disease Day on 29 February, global CRO calls on the rare disease community to share stories and resources, inspiring innovation in rare disease research and care.
RESEARCH TRIANGLE PARK, N.C. – 15 February 2024 – Worldwide Clinical Trials (“Worldwide”), a privately held, leading global, full-service contract research organization (CRO), has launched the Rare Moments website to give the rare disease community an easily accessible space to connect, share stories, and uncover new possibilities and ways of thinking about rare diseases. The unique resource surfaces impactful, transformative stories from patients, family members, researchers, and others involved in rare disease care.
“We’ve heard from various rare disease community members that it’s difficult to stay updated on news, milestones, and developments in other rare diseases. The successes built out of one rare disease should and could be applied to another rare disease,” said Derek Ansel, Executive Director, Therapeutic Strategy Lead, Rare Disease for Worldwide Clinical Trials. “Those who live with, research, and treat rare diseases have a common bond, and there is power in sharing experiences as a community. By coming together in one place, these groups can learn about different viewpoints and discover new opportunities. Worldwide believes the voice of the patient should be an intrinsic part of rare disease research and care, and this website is one way we are working to amplify and spread that voice, as well as build connections and community.”
The Rare Moments website showcase experiences from diverse audiences that illustrate what it means to live with and work with rare diseases. Anyone can submit a Rare Moment, and they can be past experiences, significant highlights from the 2024 Rare Disease Week and Rare Disease Day, resources, and even hopes for the future. While the stories will evolve over time, several featured stories went live with the website’s launch on 1 February 2024. Rare disease community members are encouraged to submit their own Rare Moments leading up to Rare Disease Day on 29 February and beyond.
Around the world, 300 million people have a rare disease, and 72 percent of those diseases have genetic origins (source). A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States or 5 in 10,000 people in the European Union at any given time. Patient populations for these diseases are small and geographically widespread – a challenge for achieving access to conduct patient education and rare disease clinical research.
Learn more about Worldwide’s commitment to excellence in rare disease clinical trial design here.
About Worldwide Clinical Trials:
Worldwide Clinical Trials (Worldwide) is a leading full-service global contract research organization (CRO) that works in partnership with biotechnology and pharmaceutical companies to create customized solutions that advance new medications – from discovery to reality. Worldwide’s capabilities include bioanalytical laboratory services, Phase I-IV clinical trials, and post-approval and real-world evidence studies – all powered by an accessible team of clinicians, scientists, and researchers who bring first-hand expertise and a collaborative, personalized approach to each clinical program. Worldwide is therapeutically focused on neuroscience, oncology, rare diseases, and cardiometabolic and inflammatory disease. Its global footprint spans nearly 60 countries with more than 3,400 team members. For more information, visit www.worldwide.com.
Media Contact:
Jill Mastrangelo
Director, Global Corporate Communications
Jill.Mastrangelo@Worldwide.com
