TOPIC: Featured News, Patients & Members, Advocacy, Voices of Rare Cancer 2020
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
TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd
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
TOPIC: Press Releases, Featured News, Patients & Members, Advocacy
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
TOPIC: Featured News, Advocacy, Patient Stories, Newborn Screening
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
TOPIC: Featured News, Patients & Members, Advocacy, Voices of Rare Cancer 2020
In this week’s Voices of Rare Cancer feature, Jeremy shares his experience with pseudomyxoma peritonei (PMP), and the role genomic testing has played in his treatment.
