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

October 26, 2017

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

NORD Releases New Documentary called “Good Morning Peyton”

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

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

June 20, 2017

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

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

Posted at June 6, 2017 12:09 pm by Christina Jensen

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

June 14, 2016

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

NORD Speakers Bureau

Posted at June 6, 2016 10:11 am by Mary Dunkle

Need a Speaker for Your Classroom or Event? Contact NORD!

Teachers, medical school professors, and community members seeking speakers to talk about rare diseases in the classroom or at community events can contact NORD for help. Working closely with its 250 member organizations, NORD now has a Patient/Caregiver Speakers Bureau to match seasoned volunteer speakers with opportunities in their local… Read More

October 22, 2015

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

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

July 28, 2015

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

Miss Iron County Supports Rare Disease Advocacy and Awareness

Posted at July 7, 2015 09:31 pm by Christina Jensen

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

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