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

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

May 13, 2015

TOPIC: Featured News, Medical, Patients & Members, Research, Sticky Posts for Patient Organizations, Sticky Posts for Patients and Families, Sticky Posts for Industry, Sticky Posts for Clinicians and Researchers, Sticky Posts for Advocate

2015 Rare Disease and Orphan Products Breakthrough Summit

Posted at May 5, 2015 08:00 am by Lisa Sencen

Save The Date for NORD’s Annual Rare Diseases and Orphan Products Breakthrough Summit – October 21-22, 2015 at the Crystal City Marriott in Arlington, VA.

This is the largest and most meaningful multi-stakeholder event of its kind – Historically featuring over 20 speakers from the FDA, participation from over 80 patient organizations and the Pharma/Biotech industry’s foremost experts in orphan product… Read More

Tags: Orphan products, NORD Summit