Data Archives - NORD (National Organization for Rare Disorders)

All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

Written by Rohan Narayanan on August 3, 2022

Wasilla, Alaska, August 3, 2022—All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety of complications which may include mild to moderate intellectual impairment, growth delay, skeletal abnormalities, heart defects, hearing impairment, hypotonia,… Read More

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

Archives for: August 3rd, 2022

All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

Written by Rohan Narayanan on August 3, 2022

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

Written by Rohan Narayanan on September 15, 2021

Alone we are rare. Together we are strong.®