Sticky Posts for Advocate Archives - NORD (National Organization for Rare Disorders)

September 13, 2021

TOPIC: Press Releases, Advocacy, Sticky Posts for Advocate

NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

Posted at September 9, 2021 12:37 pm by Rohan Narayanan

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the more than 25 million Americans with rare diseases, issued the following statement in response to upcoming congressional consideration of the Build Back Better Act in the House Committee on Ways and Means:

Peter Saltonstall, CEO and President of NORD, stated: “This week, the Ways and Means… Read More

Tags: NORD, patients, Congress, Orphan Drug Act, rare disease, orphan drug tax credit, Peter Saltonstall, orphan drug, National Organization for Rare Disorders, orphan, Ways and Means, Build Back Better, Build Back Better Act, 1983 Orphan Drug Act, US, Tax Cut and Jobs Act

October 26, 2017

TOPIC: Press Releases, Featured News, Advocacy, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Advocate, Patient Stories, Get Involved

NORD Releases New Documentary called “Good Morning Peyton”

Posted at October 10, 2017 12:03 pm by Lisa Sencen

View the full documentary.

Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is a reality. In a new documentary released today, see how the National Organization for Rare Disorders (NORD) partnered with Peyton’s hometown to turn one special… Read More

Tags: NORD, Rare Diseases, documentary, xeroderma pigmentosum, #DoYourShare, Good Morning Peyton

June 20, 2017

TOPIC: Featured News, Advocacy, Sticky Posts for Advocate, Events, Get Involved

NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

Posted at June 6, 2017 12:09 pm by Lisa Sencen

Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients,… Read More

October 22, 2015

TOPIC: Featured News, Advocacy, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Advocate, Get Involved

NORD Releases First-Ever State Progress Report for Rare Diseases

Posted at October 10, 2015 03:00 pm by Jennifer Huron

Leading Advocacy Organization Drives Health Policy Improvements for 30 Million Americans with Rare Diseases through Rare Action™ Network

With patient access to health care becoming increasingly dependent upon state policies, the National Organization for Rare Disorders (NORD)® has developed and released the first-ever State Progress Report to evaluate how states are serving the 30 million Americans with rare… Read More

Tags: Peter L. Saltonstall, advocacy, Rare Action Network, Rare Action, #NORDReport, State Progress Report, Tim Boyd

July 28, 2015

TOPIC: Featured News, Advocacy, Sticky Posts for Advocate, Get Involved

Miss Iron County Supports Rare Disease Advocacy and Awareness

Posted at July 7, 2015 09:31 pm by Lisa Sencen

Recently, NORD was happy to receive a Facebook message from a young woman named Angelia Benson. She expressed interest in using NORD’s logo in a parade as part of her competition to become Miss Utah. We were thrilled to learn that Angelia, who is the reigning Miss Iron County Utah, was interested in rare diseases and in using her… Read More

Tags: Rare Disease Awareness, Rare Disease Advocacy, Miss Iron County, Miss Utah, 2q23.1 Microdeletion/Duplication, Aware of Angels, Angelia Benson