Building trust in rare disease with Julie Walters | Podcast #09
Welcome to the Talking Precision Medicine podcast. In this series, we sit down with experts on the application of AI and big data analytics in the drug discovery space. Our guests are innovators, business decision makers and thought leaders at the intersection of data and therapeutics. We discuss the promise, practice, challenges, and myths of AI in precision medicine. This show is brought to you by Genialis, and Rafael, our CEO, is your host.
Genialis is focused on data integration and predictive modeling of disease biology to help accelerate the discovery and de-risk the development of novel therapeutics.
Today we speak with Julie Walters. Julie is the founder of Raremark, an information hub about rare disease for patients and their families.
She has a degree in molecular genetics and a background in popular journalism… and is an entrepreneur by nature. In fact, she was a Female Entrepreneur of the Year at the UK’s 2017 Enterprise Awards.
Julie believes in harnessing the power of families affected by a rare disease, and our discussion covers many of the ways Raremark aims to do just that.
- There are 7000 different rare conditions, about 350 million people are affected by a rare disease, but only about 200 of these 7000 rare conditions have treatments available.
- People going to Raremark might find out about a clinical trial, a new treatment that has just been approved, wisdom about other people like them …
- Patients with rare conditions can also help design the trial in another way, which is simply giving their data in terms of natural history.
- One of the challenges nowadays is that 80% of trials recruit late. 50% of sites that are recruited by Pharma companies or the CROs will recruit 0 or 1 patient. So we go to patients and tell them which doctors are recruiting.
- Science is important, but the families are the force that can move the mountains here when talking about rare diseases. They will be the activators of change.