Skip to main content

In their ongoing efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and get the most of this information.

“Patient data is perhaps the most valuable asset that rare disease communities can leverage to spark research interest and drive drug development in their field,” said Craig Martin, CEO of Global Genes, in a press release.

RARE-X is a non-profit organization that collects, structures and shares patient data with the goal of accelerating the search for treatments and cures for rare diseases. Its RARE-X data collection platform uses proven technology and models at different scales.

As part of its collaboration with Global Genes, RARE-X will provide its expertise to create data collection portals for interested patient communities, allowing them to securely collect patient data and share it with researchers around the world. whole world.

The organization will also provide training and education on how to use these portals and provide ongoing support services to help patient communities share their data with researchers around the world.

It should be noted that patients and undiagnosed individuals will also be able to collect and share their data to advance research, as the partnership will also create an entry point for these patients.

“By working with RARE-X, we will enable rare disease communities to collect, use and share their data to drive progress towards treatments,” Martin said.

Global Genes is one of the largest patient communities in existence and is dedicated to improving the lives of over 400 million people worldwide who live with a rare disease. It aims to bring different patient perspectives to the table and improve equity and inclusion.

Its RARE Foundation Alliance is a coalition that includes more than 800 rare disease organizations worldwide and represents more than 1,000 rare diseases. Members of this alliance can begin signing up for RARE-X’s data collection initiative in early 2022.

Participating patients and organizations will have free access to the RARE-X data collection platform.

“By adding and integrating the data collection capabilities of RARE-X into Global Genes’ offering to its network, we will enable many more patient groups to benefit from faster research breakthroughs,” said Charlene Son. Rigby, CEO of RARE-X. .