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September 30, 2021

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

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

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

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan and MRI came back as inconclusive, she recommended for… Read More

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

September 1, 2021

TOPIC: Featured News, Newborn Screening

Newborn Screening: History, Future and Awareness Month

Posted at September 9, 2021 02:15 pm by Valaree DonFrancesco

Every September, we celebrate and raise awareness for newborn screening (NBS) in the United States and the impact it has had on millions of families. Each year, approximately four million babies are screened for serious disorders that are present at birth. Of those four million, screening identifies over 12,000 infants annually with a condition that, if left undiagnosed and untreated, would cause… Read More

April 29, 2021

TOPIC: Featured News, Patients & Members, Advocacy

New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey

Posted at April 4, 2021 11:33 am by Valaree DonFrancesco

The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is in need of information or resources to assist you on your diagnosis journey, please visit our Undiagnosed Rare Disease… Read More

April 7, 2021

TOPIC: Featured News, Patients & Members

Ray Stevens is Taking Rare Disease Awareness to New Heights

Posted at April 4, 2021 09:25 am by Valaree DonFrancesco

In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help create two new medicines for this devastating rare disease. Then in 2007, his daughter, who was four years old at the time, was diagnosed with Kawasaki disease, a rare… Read More