Research Archives - Page 3 of 27 - NORD (National Organization for Rare Disorders)

September 15, 2021

TOPIC: Press Releases, Research, RDCA-DAP

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

Posted at September 9, 2021 08:30 am by Rohan Narayanan

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 disease stakeholders, featuring a platform demonstration, industry expert presentations… Read More

Tags: NORD, FDA, RDCA-DAP, C-Path, The Rare Disease Cures Accelerator-Data and Analytics Platform, Data

June 11, 2021

TOPIC: Patients & Members, Research, Advocacy, Patient Stories

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Posted at June 6, 2021 10:15 am by Valaree DonFrancesco

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling home, he reflected on his journey by saying, “Although I can never fully understand what those… Read More

Tags: advocacy, awareness, Mount Everest, Ray Stevens

May 27, 2021

TOPIC: Press Releases, Medical, Research

NORD Welcomes Edward Neilan, MD, PhD, as Chief Medical and Scientific Officer

Posted at May 5, 2021 07:55 am by Valaree DonFrancesco

Quincy, MA and Danbury, CT, May 27, 2021—The National Organization for Rare Disorders (NORD®), the leading patient advocacy organization dedicated to the identification, treatment and cure of rare diseases, announced the appointment of Edward Neilan, MD, PhD, to the new position of Chief Medical and Scientific Officer. Dr. Neilan, an internationally recognized physician-scientist and rare genetic disease expert, will oversee… Read More

Tags: press release, IAMRARE, chief medical and scientific officer, edward neilan

April 22, 2021

TOPIC: Press Releases, Medical, Research

CDISC and NORD Partner to Develop Data Standards for Rare Diseases

Posted at April 4, 2021 11:30 am by Valaree DonFrancesco

Danbury, CT and Austin, TX – April 22, 2021 – CDISC and the National Organization for Rare Disorders (NORD^®) have announced a partnership to develop global data standards for rare diseases. The data standards will be released in a Therapeutic Area User Guide that will be available at no cost on the CDISC website for researchers to leverage in… Read More

March 25, 2021

TOPIC: Press Releases, Featured News, Research, Industry

New Study Investigates the Number of Available Orphan Products, Generics and Biosimilars

Posted at March 3, 2021 09:29 am by Jennifer Huron

Washington, DC, March 25, 2021—The National Organization for Rare Disorders (NORD®) today announced the findings of a new study that details the number of orphan products, generics and biosimilars available to treat rare diseases. NORD commissioned Avalere to conduct the analysis to examine if laws and regulations are helping to bring… Read More

Tags: FDA, Orphan Drug Act, orphan drugs, drug development, Patent, Orphan products, biosimilars, RareInsights, US Food and Drug Administration, Avalere, generics