Head of the Herd Archives - NORD (National Organization for Rare Disorders)

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

Tags: adrenoleukodystrophy, ALD, Taylor Kane, Remember the Girls, covid-19, X-linked diseases, immunosuppressed, Abby Norman

June 19, 2020

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

Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Posted at June 6, 2020 08:25 am by Laura Mullen

At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Beverley advocates for those living with… sickle cell disease.

How Beverley got here…

I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a family member who is currently living with sickle cell… Read More

Tags: sickle cell disease, covid-19, Centers for Disease Control and Prevention, Beverley Francis-Gibson, Sickle Cell Disease Association of America, Red Cross, SCDAA, Oprah Winfrey

May 22, 2020

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

Head of the Herd: Emile Najm, KAT6A Foundation

Posted at May 5, 2020 08:46 am by Laura Mullen

At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation

Emile most frequently checks his… Facebook account

Emile advocates for those living with… A rare syndrome resulting from a mutation in the KAT6A gene.

Emile is located in… West Nyack, New York

How Emile got here… Emile Najm’s son was diagnosed with KAT6A syndrome in 2017. Since then,… Read More

Tags: KAT6A syndrome, KAT6A Foundation, Rare As One, Chan Zuckerberg Initiative

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

Tags: Children's Hospital of Philadelphia, H-abc, TUBB4A gene mutation, Foundation to Fight H-abc

July 31, 2020

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

Posted at July 7, 2020 12:15 pm by Laura Mullen

July 17, 2020

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

Posted at July 7, 2020 08:01 am by Laura Mullen