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September 15, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Newborn Screening

A Newborn Screening Reflection: Sarah’s Story

Posted at September 9, 2020 08:58 am by Laura Mullen

September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that looks for dozens of genetic disorders in babies that are not so easily apparent at birth.

My husband Chris and I waited to have kids, enjoying the early years of… Read More

September 4, 2020

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020

#RareCancerDay is September 30! NORD will share facts, information and patient stories throughout the month.

Posted at September 9, 2020 08:44 am by Laura Mullen

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living… Read More

June 12, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Rare Reflections: Jacob’s Story

Posted at June 6, 2020 08:48 am by Laura Mullen

I was diagnosed with toxic acute progressive leukoencephalopathy, a rare brain disease that took me from a high functioning and able-bodied individual to locked in syndrome, in six months. This story began on May 24, 2017 at UMass Memorial Hospital in Worcester Massachusetts. I went to the emergency department with stroke-like symptoms. Life was never the same.

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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 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