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September 24, 2015

TOPIC: Featured News, Patient Stories

Jill Zeigler’s Story: Life with aHUS

Posted at September 9, 2015 03:56 pm by Lisa Sencen

“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.”

At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks spent in and out of different hospitals, Zeigler finally learned what the cause had been: an extremely rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). This disease,… Read More

September 16, 2015

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events, Patient Stories, Get Involved

Rare Disease Day 2016 Theme and Slogan Announced!

Posted at September 9, 2015 04:52 pm by Jennifer Huron

Rare Disease DayTheme: Patient Voice
Slogan: Join us in making the voice of rare diseases heard

It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited to announce the theme for Rare Disease Day 2016 with EURORDIS, our partner and the… Read More

August 26, 2015

TOPIC: Patient Stories

Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD

Posted at August 8, 2015 03:22 pm by Jennifer Huron
Garrett Mann

 “I really appreciate all that NORD does for those living and managing their lives with rare disorders.” -Paula Mann

Paula Mann is a mother of a boy, Garrett, born in 2008 with Mitochondrial Disease, a rare disease that can be present at birth or come on later in life.  He passed away in 2012.  “This was my and… Read More

August 24, 2015

TOPIC: Press Releases, Medical, Sticky Posts for Clinicians and Researchers, Patient Stories

New Video from NORD Promotes Awareness of Rare Movement Disorder Neurogenic Orthostatic Hypotension

Posted at August 8, 2015 12:48 pm by Jennifer Huron

A new video released today by the National Organization for Rare Disorders (NORD) fills a gap in health care by educating patients and doctors about a rare medical condition known as Neurogenic Orthostatic Hypotension (nOH), and how to improve patient outcomes.

“Living with a rare condition like nOH affects every part of your daily life,” says Mary Dunkle, Vice President of… Read More

July 16, 2015

TOPIC: Patient Stories

Guest Blog: A Parent Advocate & Author Discusses Courage

Posted at July 7, 2015 02:57 pm by Jennifer Huron

By David Cry, Guest Blogger

David CryCourage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. I have heard it in the words of mothers whose sons have been diagnosed with this fatal illness. Witnessed it in the… Read More