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October 23, 2020

TOPIC: Uncategorized

Head of the Herd: Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Posted by Laura Mullen

At the Head of the Herd is… Lanie Etkind, Executive Director, Familial Dysautonomia Foundation

Lanie advocates for those affected by… familial dysautonomia (FD)

Lanie is located in… New York, NY

How Lanie got here… I first heard of this rare disorder when a friend’s son was born with it 14 years ago. I was merely a donor to the Foundation until I… Read More

October 21, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy, Industry, RDCA-DAP

RDCA-DAP First Year Milestones Highlighted at Virtual Workshop

Posted by Laura Mullen

TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19. The platform, funded by a cooperative agreement through the U.S. Food and Drug Administration (FDA), serves as… Read More

October 15, 2020

TOPIC: Featured News, Patients & Members, Advocacy, COVID-19

NORD Issues Report on Ensuring Access to Telehealth for Rare Diseases

Posted by Jennifer Huron

For those in the rare community, one of the few positives that have come from the global COVID-19 pandemic has been the wider availability of telehealth services. Through surveys, virtual discussion groups and direct advocacy efforts, NORD has continued to track rare patients’ and caregivers’ use of and experience with telehealth. The findings from NORD’s work are gathered in… Read More

October 15, 2020

TOPIC: Featured News, Patients & Members, #NORDintheNews

NORD mentioned, RareInsights fact sheet featured in Psychology Today article

Posted by Laura Mullen

A new article on PsychologyToday.com, “People with Rare Diseases Need Better Social Support,” examines a new study that shows which types of support most benefit those with rare diseases. NORD is mentioned in the article and our RareInsights rare disease factsheet (see above) is prominently featured.

#NORDinthenews

 

October 14, 2020

TOPIC: Featured News, Patients & Members, Research, Industry, RDCA-DAP

NORD and C-Path Release New Video, “RDCA-DAP: Shortening the Timeline for Developing New Treatments for Rare Diseases”

Posted by Laura Mullen

NORD and the Critical Path Institute (C-Path) are collaborating on a new initiative, the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), bringing together data from different sourcesRead More