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March 21, 2020

TOPIC: Featured News, Patients & Members

US News & World Report Features NORD and Dr. Marshall Summar in “What To Do If Your Child Is Diagnosed with a Rare Disease”

Posted at March 3, 2020 11:42 am by Laura Mullen

#NORDinthenews

NORD is featured as a rare disease resource and Dr. Marshall Summar, Chairman of NORD’s Board of Directors, is quoted extensively in an article published by US News and World Report that provides information and advice for parents dealing with a recent rare disease diagnosis for their child.

https://health.usnews.com/conditions/articles/when-your-child-has-a-rare-disease

 

March 20, 2020

TOPIC: Featured News, Medical, Patients & Members, Industry, COVID-19

COVID-19 Resources for Non-profit Leaders and the Community

Posted at March 3, 2020 09:32 am by Valaree DonFrancesco

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus pandemic on all elements of our work including mission-critical… Read More

March 20, 2020

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

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

Posted at March 3, 2020 07:59 am by Laura Mullen

Head of the Herd: Michele Sloan, Foundation to Fight H-abc

At the head of the herd is… Michele Sloan, Director, Foundation to Fight H-abc

Michele most frequently checks her… Facebook page

Michele advocates for those living with… Hypomyelination with atrophy of basal… Read More

March 11, 2020

TOPIC: Patients & Members, Advocacy, Events, Rare Disease Day

Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD

Posted at March 3, 2020 08:14 am by Laura Mullen

If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of information on the disease, or trying to even get to an accurate diagnosis!). The number one priority for me after my sister was diagnosed with a rare,… Read More

March 6, 2020

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

Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation

Posted at March 3, 2020 07:59 am by Laura Mullen

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation

Akiva most frequently checks his…  https://www.facebook.com/Akiva 

Akiva advocates for those living with… hyper IgM syndrome

Akiva is located in… New York, NY

How Akiva got here…

In 2013, my son was… Read More