Press Releases Archives - NORD (National Organization for Rare Disorders)

June 22, 2017

TOPIC: Advocacy, Featured News, Press Releases

NORD Issues Statement on the Better Care Reconciliation Act of 2017

Posted at June 6, 2017 10:47 am by Christina Jensen

Washington, D.C., June 22, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding the release of the Senate Leadership’s Better Care Reconciliation Act of 2017 discussion draft:

“Senate Leadership today released a discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of… Read More

Tags: ACA, Affordable Care Act, AHCA, American Health Care Act, BCRA, Better Care Reconciliation Act of 2017, healthcare reform, protect your healthcare coverage

April 4, 2017

TOPIC: Press Releases

NORD Names New Director of Membership

Posted at April 4, 2017 09:26 am by Jennifer Huron

Washington, D.C., April 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announces the recent hire of Debbie Drell as Director of Membership. In her role, Debbie will be responsible for overseeing NORD’s Membership programs, which support the collective and individual needs of rare disease patient organizations,… Read More

Tags: NORD Member Organization, Rare Action Network

March 31, 2017

TOPIC: Patients & Members, Press Releases, Research

International Pemphigus & Pemphigoid Foundation Launches Largest-Ever Study of Pemphigus and Pemphigoid

Posted at March 3, 2017 09:55 am by Jennifer Huron

Research study is open to participants worldwide to advance understanding and treatments for rare disease causing blistering that may be accompanied by severe pain, itching, burning, and stinging.

Sacramento, CA and Washington, D.C., March 31, 2017—The International Pemphigus & Pemphigoid Foundation (IPPF), a NORD member organization, has launched… Read More

Tags: FDA, natural history, natural history studies, Natural History Study Project, NORD Member Organization, Peter L. Saltonstall

March 27, 2017

TOPIC: Press Releases, Uncategorized

NORD and Neurology Reviews Publish Special Report

Posted at March 3, 2017 03:29 pm by Jennifer Huron

As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication of the 3rd annual Rare Neurological Disease Special Report™, with Neurology Reviews®, a Frontline Medical Communications (FMC) print and digital media publication.

Published as a supplement to the… Read More

Tags: Hereditary Neuropathy Foundation, Keck Graduate Institute, Neurology Reviews, Rare Neurological Disease Special Report

March 21, 2017

TOPIC: Advocacy, Press Releases

NORD and Friends of Cancer Research Issue Joint Statement In Advance of this Week’s Congressional Hearings on FDA User Fees

Posted at March 3, 2017 09:48 am by Jennifer Huron

Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, issued the following statement in advance of this week’s congressional hearings on the reauthorization of FDA user fees:

Tags: Cancer, FDA, PDUFA, user fees

1
2
3
…
11
Next >