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A Ready Source of Funding to Advance Rare Disease Therapies
by Danny Levine When California voters approved Proposition 14 in 2020, it created $5.5 billion in funding […]
Read moreCoalition to Cure CHD2 Joins RARE-X Data Collection Program
by Danny Levine In January 2021, a group of advocates and parents formed the Coalition to Cure […]
Read moreRARE-X Marks a Year of Accomplishments
by Danny Levine Since launching its first rare disease communities last June, RARE-X, the collaborative platform for […]
Read moreEnsuring Data Silos Don’t Undermine Research
by Danny Levine While research and development activities are rapidly advancing within the realm of rare diseases, […]
Read moreWe Will Never Sell Patient Data Because It Is Not Ours to Sell
by Danny Levine At RARE-X, we are entrusted with a great responsibility: to collect patient data on […]
Read moreSmart Technology Brings Virtual Clinical Trials to the Patient
by Danny Levine Though the advent of smartphones and inexpensive sensors enables the capture of data that […]
Read morePatient-Powered Registry Boosts the Study of a Rare Disease
by Danny Levine The development of patient registries and natural history studies for rare diseases are critical […]
Read moreNIH to Improve Storage and Sharing of Medical Data
NIH Establishes Center of Excellence to Improve Storage and Sharing of Medical Data about Genetic Diseases by […]
Read moreEverything’s up to Date in Kansas City, at Least When It Comes to Genomics
by Danny Levine At the end of October, the National Institutes of Health introduced a new data […]
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