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June 10, 2022

TOPIC: Patient Stories

Living Stronger: Jessica’s Rare Journey

Posted by Julie Ostroff
Close up of Jessica smiling.

I am 17 years old and a high school junior with hEDS (hypermobile Ehlers-Danlos syndrome). I should be attending a performing arts high school for musical theatre, but that’s not the case for me anymore.

About a year ago, I was diagnosed with EDS by a geneticist, which has progressed to a point where I can’t go to school… Read More

June 9, 2022

TOPIC: Press Releases, Advocacy, RDACs

Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Posted by Rohan Narayanan

New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases

June 9, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council (RDAC), making Colorado the 10th state to… Read More

June 8, 2022

TOPIC: Press Releases, Advocacy

NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022

Posted by Rohan Narayanan

WASHINGTON, June 8, 2022—Today, the U.S. House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (H.R. 7667), legislation with significant implications for millions of Americans living with rare diseases. The bipartisan bill is an important step forward in reauthorizing the FDA’s medical product user fee programs, helps strengthen the accelerated approval pathway,… Read More

June 8, 2022

TOPIC: NORDPod

Living With Trichotillomania: Pageant Queen Sarah Pennington

Posted by Valaree DonFrancesco

You’re in for a treat on today’s episode of NORDpod as I welcome chronic illness advocate Sarah Pennington to the show. Since the age of 11, Sarah has been managing a condition known as Trichotillomania, a disorder that involves recurrent, irresistible urges to pull out body hair. An estimated 330,000 children… Read More

May 27, 2022

TOPIC: Patient Stories

Raymond’s Journey to a New Normal

Posted by Julie Ostroff

Imagine being a healthy 30-year-old waking up one day to find yourself stumbling, fatigued, tripping and unable to walk. Following two trips to the emergency room, you are told to return home, drink plenty of fluids and within a few days the symptoms will subside. Days later, you find yourself still experiencing an ongoing severity of symptoms, now crawling… Read More