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

December 6, 2021

Head of the Herd: Mark Laabs, Rare Cancer Research Foundation (RCRF)

Posted at December 12, 2021 08:00 am by Maia Craig

Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer patients.

What motivated you to start RCRF?

I am a rare cancer survivor, and I was diagnosed with ocular melanoma at the age of twenty-eight in 2012…. Read More

Tags: Cancer, research, rare cancer, rare cancer coalition, DEI, Head of the Herd

September 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted at September 9, 2021 08:00 am by Maia Craig

David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was… Read More

Tags: Cancer, rare disease community, National Brain Tumor Society, rare cancer, David Arons, NBTS, brain, tumor, Rare Cancer Day 2021

February 19, 2021

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

Head of the Herd: Chandra Clark, VHL Alliance

Posted at February 2, 2021 08:40 am by Valaree DonFrancesco

At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over to your work with the von Hippel-Lindau syndrome (VHL)… Read More

Tags: VHL Alliance, von Hippel-Lindau, DEI, health equity, Chandra Clark, centers of excellence

November 13, 2020

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

Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Posted at November 11, 2020 08:51 am by Valaree DonFrancesco

At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation
Charlene advocates for those affected by… STXBP1 encephalopathy
Charlene is located in… San Francisco, CA
Charlene most frequently checks her… Twitter account @charleneson
How Charlene got here… My daughter, Juno, was diagnosed with STXBP1 encephalopathy in 2016 after a three-year journey to find an explanation for her condition…. Read More

Tags: STXBP1 Foundation, Charlene Son Rigby, STXBP1, STXBP1 Move to Cure, AAC device, dyslexia, whole exome sequencing, STXBP1 encephalopathy

October 9, 2020

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

Head of the Herd: Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Posted at October 10, 2020 08:33 am by Valaree DonFrancesco

At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society
Jennifer advocates for those affected by… necrotizing enterocolitis (NEC)
Jennifer is located in… Davis, California
Jennifer most frequently checks her… Twitter page
How Jennifer got here… My son Micah developed NEC when he was six weeks old. He endured multiple bowel resections which left him with… Read More

Tags: necrotizing enterocolitis, NEC, NEC Society, Jennifer Canvasser, DEI, inclusivity policy, Chasten Buttigieg

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