Rare Disease Cures Accelerator Data and Analytics Platform Archives - NORD (National Organization for Rare Disorders)

Head of the Herd: Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Written by Laura Mullen on August 14, 2020

At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS)

How Katie got here… When I was diagnosed with VEDS at 28 years old in 2017, I felt very alone. I was also pretty… Read More

New video from NORD and C-Path addresses the question: “What is a Registry?”

Written by Laura Mullen on June 2, 2020

What is a registry and why are they so important to the rare disease community? Together, NORD and the Critical Path Institute (C-Path) created this video to explain the value in registries… Read More

Innovative Data and Analytics Platform to Accelerate Drug Development for Rare Diseases

Written by Laura Mullen on September 19, 2019

Launched by C-Path and NORD through an FDA grant, the goal of the new platform is to accelerate the development of cures by addressing the need to better characterize rare diseases.

TUCSON, Ariz. and WASHINGTON, September 19, 2019 — The Critical Path Institute… Read More

FUNDED BY FDA, C-PATH and NORD TO LAUNCH RARE DISEASE DATA ANALYTICS PLATFORM

Written by Lisa Sencen on August 7, 2019

The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures for rare diseases.

TUCSON, Ariz. and WASHINGTON, Read More

Archives for: August 14th, 2020