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

Health Technology Expert and Rare Disease Patient Jason Colquitt Strengthens RARE-X Board

Jason Colquitt, the newest addition to the RARE-X board of directors, remembers the exhaustion he

Read More
Insights

Grossman Brings a Diverse Perspective to the RARE-X Board

Cynthia Grossman, the newest addition to the RARE-X board, says she’s “obsessed with the

Read More
Insights

Patient-Powered Registry Boosts the Study of a Rare Disease

The development of patient registries and natural history studies for rare diseases are critical to

Read More
Videos

Data Standards and RARE-X

Data standards are a big topic that, among other things, involve how data are measured, recorded,

Read More
Teneasha Washington
Insights

RARE-X Launches DEI Scoping Project

For Teneasha Washington, the problem of diversity in rare disease advocacy and research is apparent

Read More
Press Releases

RARE-X Launches Diversity, Equality, and Inclusion Program

New RARE-X DEI program assures the diversity of the rare disease community is represented in the

Read More
RARE-Xtra/Podcasts

Accelerating Treatments for Rare Disease through Data Sharing – Podcast

Patients’ data is critical to rare disease innovation, but it does little to advance progress if

Read More
Insights

NIH Establishes Center of Excellence to Improve Storage and Sharing of Medical Data about Genetic Diseases

The National Institutes of Health has established a new Center of Excellence in Genomic Sciences to

Read More
Insights

Everything’s up to Date in Kansas City, at Least When It Comes to Genomics

The Genomic Medicine Center at Children’s Mercy Hospital is working to sequence 100,000 genomes

Read More
Videos

Bringing Data Back To Patients

Vaness Vogel-Farley, R&D Strategy Lead for RARE-X, speaks about Bringing Data Back To Patients.

Read More
Translate »