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Julie Walters

Founder & Executive Director



Founder & Executive Director










What makes Julie Walters a Global Shaker? 

Julie Walters is the founder of Raremark, a firm that has been described as the “Facebook for people with rare diseases.”

Julie started Raremark after her father died of a rare lung condition called idiopathic pulmonary fibrosis, and she experienced the “profound desperation” of limited information and choices.

Raremark is helping Julie realise her vision of a future in which all rare diseases are treated.

The platform builds communities of people affected by a rare condition by enabling the sharing of knowledge and harnessing the wisdom of the crowd.

“We offer patients living with a rare condition the ability to find out about clinical trials and recently approved treatments, and to learn from the experience of other people like them.” 

It blends machine-learning skills, data and behavioural science, patient advocacy, and online engagement to help rare disease patients discover and share peer-reviewed information, and to learn new ways to cope. 

Raremark also collects real-world anonymized and aggregated patient data which is then provided to biopharmaceutical companies to support clinical development and accelerating speed of treatments to market.

It was recently announced that Raremark was partnering with TriNetX,  a global health research network that revolutionizes clinical research.

The TriNetX team will pull in and map Raremark demographics, diagnoses and other data to make it available on the TriNetX platform. As a member of the network, a pharma company can send Raremark trial opportunities directly using TriNetX’s Trial Connect functionality.


Julie is an Australian Native who started out her career as a reporter before moving to London to make it on Fleet St, the home of journalism, and then served as a national television news editor.

It was in the 1990s, that she changed tack and followed a love of science to gain a first-class degree in molecular genetics from King’s College London where she learned from Nobel Laureate Maurice Wilkins, who won the Nobel prize for unravelling the structure of DNA with Watson & Crick.

“The future is in genomic data: helping families understand what DNA they have, what their genomic profile is and how that differs from other people because that will affect what kind of drugs you should get,” says Julie.

Tags: genomics, patient advocacy, precision medicine, rare diseases

Last updated: February 29, 2020