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August 14, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Posted by Laura Mullen

At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS)

How Katie got here… When I was diagnosed with VEDS at 28 years old in 2017, I felt very alone. I was also pretty fired up about how long it had taken me… Read More

August 12, 2020

TOPIC: Featured News, #NORDintheNews

NORD Included in Parade.com Article on Rare Autoimmune Diseases

Posted by Laura Mullen

#NORDinthenews

NORD is mentioned as an information source in “10 Rare Autoimmune Diseases That Don’t Get Enough Attention,” an article appearing in Parade.com’s “Healthy Now” column today. Parade.com is the official site of Parade, the most widely read magazine in the US. The site receives over 4 million visits each month.

Read the article here.

 

July 31, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey

Posted by Laura Mullen

At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey

Seth most frequently checks his… Twitter or Instagram accounts

Seth advocates for… Young adults between the ages of 18 – 35 living with a rare disease or chronic condition

Seth is located in… Boston, Massachusetts

How Seth got here… When I was 15 my mom was officially diagnosed with Huntington’s disease,… Read More

July 23, 2020

TOPIC: Press Releases, Featured News, COVID-19

NORD Awards COVID-19 Rapid Response Seed Grants to Rare Disease Patient Organizations Impacted by the Pandemic

Posted by Laura Mullen

Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient advocacy groups to access capacity-buildingRead More

July 17, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

Posted by Laura Mullen

At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls

Taylor advocates for those living as… Carriers of all X-linked diseases

Taylor is located in… Mount Laurel, New Jersey

Taylor most frequently checks her… Twitter page

How Taylor got here…  In 2001, when I was three-years-old, my dad was diagnosed with a rare X-linked disease called adrenoleukodystrophy… Read More