Rare Disease News

From Mother to Daughter

Published October 1, 2015 by NORD

Categorized in -

Patient Stories

“Although this horrible rare disease has taken a lot of time away from normal life, my family and I are blessed for every breath, every smile, and every rainy day! …

Continue reading “From Mother to Daughter”

Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

Published September 30, 2015 by NORD

Categorized in -

Patient Stories

“We are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.” …

Continue reading “Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity”

Jill Zeigler’s Story: Life with aHUS

Published September 24, 2015 by NORD

Categorized in -

“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 …

Continue reading “Jill Zeigler’s Story: Life with aHUS”

Rare Disease Day 2016 Theme and Slogan Announced!

Published September 16, 2015 by NORD

Categorized in -

Theme: 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 …

Continue reading “Rare Disease Day 2016 Theme and Slogan Announced!”

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

Published August 26, 2015 by NORD

Categorized in -

Patient Stories

“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 …

Continue reading “Giving Spotlight: Paula Mann Honors Son, Garrett, with Donation to NORD”

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

Published August 24, 2015 by NORD

Categorized in -

New video promotes awareness and educates doctors about Neurogenic Orthostatic Hypotension

Guest Blog: A Parent Advocate & Author Discusses Courage

Published July 16, 2015 by NORD

Categorized in -

Patient Stories

By David Cry, Guest Blogger Courage. Strength in the face of pain or grief. A tenet I have experienced on many occasions as the lead of The Adrenoleukodystrophy (ALD) Foundation. …

Continue reading “Guest Blog: A Parent Advocate & Author Discusses Courage”