News - Page 2 of 135 - NORD (National Organization for Rare Disorders)

November 13, 2020

TOPIC: Featured News, Medical, Advocacy, #NORDintheNews

Telehealth Report from NORD Covered in Managed Healthcare Executive

Posted by Laura Mullen

NORD’s recent telehealth report was featured in an article in Managed Healthcare Executive, a digital magazine from MJH Life Sciences, on 11.12.2020:

“The federal government took important steps to temporarily expand coverage for telehealth services during the pandemic, including removing barriers for Medicare patients. Plus, most states are allowing out-of-state healthcare providers in good standing to practice telehealth across state… Read More

Tags: telehealth services, covid-19, telehealth

November 13, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Posted by Laura Mullen

At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Charlene advocates for those affected by… STXBP1 encephalopathy

Charlene is located in… San Francisco, CA

Charlene most frequently checks her… Twitter account @charleneson

How Charlene got here… My daughter, Juno, was diagnosed with STXBP1 encephalopathy in 2016 after a three-year journey to find an explanation for her condition…. Read More

Tags: STXBP1 Foundation, Charlene Son Rigby, STXBP1, STXBP1 Move to Cure, AAC device, dyslexia, whole exome sequencing, STXBP1 encephalopathy

November 11, 2020

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

NORD & C-Path Present 3-Part Video Series on Challenges of Rare Disease Drug Development, How RDCA-DAP Can Help

Posted by Laura Mullen

There are five steps in the drug development process, which are designed to help ensure that potential new therapies are both safe and effective. Developing medical products for rare diseases encounters many challenges throughout this process. The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) is being developed by NORD and the Critical Path Institute (C-Path) to help overcome these… Read More

Tags: RDCA-DAP, C-Path, Critical Path Institute, rare disease drug development, rare disease cures, The Rare Disease Cures Accelerator-Data and Analytics Platform

November 10, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research

NORD Drives Rare Disease Progress Through Patient-Powered Data With IAMRARE™ Registry Members

Posted by Laura Mullen

Washington, DC, November 10, 2020—This year, in conjunction with its rare disease community partners, the National Organization for Rare Disorders (NORD®) continued to drive research and innovation through the IAMRARE™ registry program. Having launched its first study in 2014, today IAMRARE supports longitudinal data collection efforts for over 40 rare… Read More

Tags: NORD, Rare Diseases and Orphan Products Breakthrough Summit, metachromatic leukodystrophy, Vanessa Boulanger, IAMRARE, Inc., Aplastic Anemia and MDS International Foundation, Stephen Hahn, KrabbeConnect, Appendix Cancer/Pseudomyxoma Peritonei Research Foundation, A Cure in Sight, necrotizing enterocolitis, US Food and Drug Administration Commissioner, Gorlin Syndrome Alliance, The Moebius Syndrome Foundation, Tatton Brown Rahman Syndrome Community, COPA Syndrome Foundation, Helping Hands for GAND, Sara's Cure, The Snow Foundation, The Association for Creatine Deficiencies, The Cute Syndrome Foundation, undiagnosed patients, arachnoiditis, moyamoya

November 3, 2020

TOPIC: Featured News, Patients & Members, Advocacy

NORD and Coalition Representing Millions of Patients Urge Policymakers to Adopt “Patient-First” Policy Agenda

Posted by Heidi Ross

NORD joined a coalition of 33 other patient organizations representing millions of people with pre-existing conditions to release our top priorities for a new administration. “The 100 Days Agenda: A Patient-First Blueprint” is a first-of-its-kind collaboration that outlines specific steps the president and other elected officials can immediately take to protect patients in the first 100 days… Read More

Tags: Medicaid, pre-existing conditions, 100 Days Agenda, Patient-First Blueprint, The 100 Days Agenda: A Patient-First Blueprint, insurance-like products, surprise medical bills

November 13, 2020

Telehealth Report from NORD Covered in Managed Healthcare Executive

Posted by Laura Mullen

November 13, 2020

Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Posted by Laura Mullen

November 11, 2020

NORD & C-Path Present 3-Part Video Series on Challenges of Rare Disease Drug Development, How RDCA-DAP Can Help

Posted by Laura Mullen

November 10, 2020

NORD Drives Rare Disease Progress Through Patient-Powered Data With IAMRARE™ Registry Members

Posted by Laura Mullen

November 3, 2020

NORD and Coalition Representing Millions of Patients Urge Policymakers to Adopt “Patient-First” Policy Agenda

Posted by Heidi Ross

Topics

Alone we are rare. Together we are strong.®