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Archives for: September 15th, 2021

Rare Disease Innovation and Data Sharing Accelerated by New RDCA-DAP Program

Written by Rohan Narayanan on September 15, 2021

TUCSON, Ariz. and WASHINGTON, September 15, 2021 — The Rare Disease Cures Accelerator-Data and Analytics Platform initiative (RDCA-DAP®) officially launched its next phase on Tuesday establishing itself as the leading platform to accelerate rare disease treatment innovation. The launch was part of an all-day virtual workshop and annual meeting of rare… Read More

NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

Written by Rohan Narayanan on September 13, 2021

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the more than 25 million Americans with rare diseases, issued the following statement in response to upcoming congressional consideration of the Build Back Better Act in the House Committee on Ways and Means:

Peter Saltonstall, CEO and President… Read More

Cure MLD, The Calliope Joy Foundation and NORD Launch A Research and Engagement Study of Metachromatic Leukodystrophy (MLD)

Written by Rohan Narayanan on August 16, 2021

Research study is open to participants worldwide to advance understanding and treatments for Metachromatic Leukodystrophy, a recessive genetic disorder that is characterized by the accumulation of fats (lipids) called sulfatides causing damage to the nervous system

Washington, DC, August 16, 2021—Cure MLD, an initiative of The Calliope Joy Foundation, and the… Read More