RARE-X
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RARE-X
We are a dedicated team of committed forward thinkers transforming rare disease in support of patients. PATIENTS' DATA POWERING PROGRESS
Nedávné epizody
8 epizod
Changing the Understanding of Rare Diseases with Data
Last year, Global Genes launched the inaugural Xcelerate RARE Open Science Data Challenge. The event brought together 24 teams of clinical researchers...
An Open Science Data Challenge to Address Rare Neurodevelopment Diseases
This spring, RARE-X will kick off Xcelerate RARE: A Rare Disease Open Science Data Challenge. For this inaugural challenge, researchers and data scien...
The Power of Being Counted
For more than a decade, governments, nonprofits, and industry organizations involved in rare disease have stated as a matter of fact that there are 7,...
Ensuring Diversity, Equity, and Inclusion in the World of Rare Disease
Ensuring diversity, equity, and inclusion in rare disease organizations requires focused programs that engage all stakeholders, according a nine-month...
Creating a Faster Path to a Rare Disease Diagnosis
Despite a growing number of diagnostic tools, it still takes an average of six years after symptom onset for a patient with a rare disease to receive...
Reinventing the Consent Process to Make It Patient-Centric
Before patients contribute their medical information to a research study, they must work through a consent agreement. These documents can be long, dif...
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 records to access better treatment options and particip...
The Challenges of Long-Term Follow-Up Studies for Cell and Gene Therapies
Welcome to the inaugural episode of RARE-Xtra, an occasional RARE-X podcast where we take a deeper dive with experts on critical issues for the rare d...