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.

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, Equity, 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
Insights

NIH Unveils New Data Sharing Policy

At the end of October, the National Institutes of Health introduced a new data management and

Read More
Videos

Collecting and Sharing Usable Patient-Reported Data on the Patient’s Terms

Megan O’Boyle discusses the challenges of starting a rare disease patient registry and gives

Read More
Videos

What is Data Governance?

When an organization begins to collect patient data, there may be a great deal of focus on such

Read More
Insights

Alexion Provides Early-Stage Funding for RARE-X

Wendy Erler has worked in rare disease patient communities her entire career. She says one theme

Read More
Translate »