PODCAST · business
RARE-X
by RARE-X
We are a dedicated team of committed forward thinkers transforming rare disease in support of patients. PATIENTS' DATA POWERING PROGRESS
Episodes
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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, data scientists, and biostatisticians from around the world. The teams competed to make the best use of patient-provided data to address...
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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 scientists will work in collaborative and competitive environment to use patient-provided data to solve research questions focused on rare pediatric...
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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 7,000 rare conditions or estimated the number to be between 5,000 to 8,000. The sources of these estimates are challenging to identify, given the...
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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 project just completed by RARE-X. The project was undertaken to provide a general overview of the rare disease landscape regarding DEI issues and...
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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 an accurate diagnosis. A recent report from the pharmaceutical company Takeda identifies three priority policy reforms designed to address the...
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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, difficult to understand, and overwhelming for research participants to complete. Often consent agreements are crafted to serve the legal needs of the...
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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 participate in research and clinical trials, this month announced a collaboration with RARE-X. Patients who use the RARE-X federated data-sharing platform...
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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 disease community. RARE-X recently produced a white paper in partnership with the ARM Foundation for Cell and Gene Medicine, which is dedicated to...
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ABOUT THIS SHOW
We are a dedicated team of committed forward thinkers transforming rare disease in support of patients. PATIENTS' DATA POWERING PROGRESS
HOSTED BY
RARE-X
CATEGORIES
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Frequently Asked Questions
How many episodes does RARE-X have?
RARE-X currently has 8 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is RARE-X about?
We are a dedicated team of committed forward thinkers transforming rare disease in support of patients. PATIENTS' DATA POWERING PROGRESS
How often does RARE-X release new episodes?
RARE-X has 8 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to RARE-X?
You can listen to RARE-X on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts RARE-X?
RARE-X is created and hosted by RARE-X.
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