PATIENTS' DATA POWERING PROGRESS

Xplore: News, Insights, and Resources

Visit this page often to learn about the latest news, insights, and resources available from RARE-X.

Insights

Ensuring Data Silos Don’t Undermine Research

While research and development activities are rapidly advancing within the realm of rare diseases,

Read More
Videos

Privacy and Security for Patient Data Collection

Managing issues of data privacy and security are a big task. Most rare disease patient

Read More
Press Releases

Ciitizen and RARE-X Collaborate to Improve Patient Outcomes for Rare Diseases

Partnership supports the long tail of rare diseases and breaking down data silos to accelerate

Read More
Insights

Ensuring RARE-X Data Represent the Diversity of Rare Diseases

While diversity, equity, and inclusion efforts have taken hold across government, business, and the

Read More
RARE-Xtra/Podcasts

A Collaboration with a Shared Vision for Transforming the Rare Disease Landscape with Patient Data

The healthcare technology company Ciitizen, which helps patients take control of their medical

Read More
Videos

Why participate in data collection?

What are the benefits to you and researchers when you participate in rare disease Data Collection

Read More
Insights

We Will Never Sell Patient Data Because It Is Not Ours to Sell

At RARE-X, we are entrusted with a great responsibility: to collect patient data on behalf of

Read More
Press Releases

Huma and RARE-X partner to accelerate research for 9,500 rare diseases

Huma, Europe’s fastest-growing health technology company1, is partnering with the non-profit

Read More
Press Releases

RARE-X Explores Patient-Owned Data Gathering for Cell and Gene Therapy Developers

In Partnership with ARM Foundation for Cell and Gene Medicine, RARE-X Has Released a White Paper

Read More
Translate »