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September 18, 2020

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

Voices of Rare Cancer: Emily’s Story

Posted by Laura Mullen

An Unlikely Warrior

A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one picked for sports. I was also usually one of the kids that got picked on first, as I most likely to cry. I was labeled “sensitive” as a child. I… Read More

September 17, 2020

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

Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect

Posted by Laura Mullen

Head of the Herd Spotlight, Amber Freed SLC6A1 Connect

At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect.

Amber advocates for… children living with the rare neurological condition SLC6A1 and their families.

Amber is located in… Denver, Colorado.

You can follow Amber and SLC6A1 Connect… on Facebook and Twitter.

How Amber got here…

I became involved in… Read More

September 16, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Advocacy

Rare Cancer Day 2020 To Take Place on September 30

Posted by Laura Mullen

Washington, DC, September 16, 2020–The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring attention to the… Read More

September 15, 2020

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

A Newborn Screening Reflection: Sarah’s Story

Posted 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