Medical Archives - NORD (National Organization for Rare Disorders)

September 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted at September 9, 2021 08:00 am by Maia Craig

David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was… Read More

Tags: Cancer, rare disease community, National Brain Tumor Society, rare cancer, David Arons, NBTS, brain, tumor, Rare Cancer Day 2021

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

April 8, 2021

TOPIC: Medical, Patients & Members, Industry, Members

NORD Expands Gene Therapy Offerings Through New Online Resources

Posted at April 4, 2021 09:00 am by Lisa Sencen

For several years, the National Organization for Rare Disorders (NORD) has prioritized gene therapy education to advance knowledge and promote safe and effective clinical applications to reduce suffering from rare conditions. With this goal in mind, NORD is dedicated to producing a variety of educational resources for patients, caregivers, health care providers, and the public.

One of the newest resources… Read More

Tags: rare disease community, Gene therapy, NORD, Rare Diseases, continuing medical education, ASGCT

January 14, 2021

TOPIC: Featured News, Medical

NORD Partners with Frontline Medical Communications on Publications for Medical Professionals in Oncology and Rheumatology

Posted at January 1, 2021 08:14 am by Valaree DonFrancesco

As part of its expanded outreach to medical professionals, NORD recently partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Rheumatology and Rare Diseases Report: Cancers, both published in late 2020.

The two special issues are the latest in a series of publications on which NORD and FMC… Read More

Tags: Boston Children's Hospital, Frontline Medical Communications, Harvard Medical School, Fibrolamellar Cancer Foundation, rare cancer coalition, John Hopper, Jim Palma, Rare Diseases Report: Rheumatology, Rare Diseases Report: Cancers, Rare Cancer Foundation, Children’s Hospital and Hackensack Meridian School of Medicine, Rebecca Aune

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