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October 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Lauren’s Story

Posted at October 10, 2019 10:34 am by Valaree DonFrancesco

My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody ever wants to hear: I was told that I had a rare form of appendix cancer. Cancers and tumors of the appendix are extremely rare, once thought to be… Read More

October 1, 2019

TOPIC: Advocacy, Events, Featured News, Patient Stories

Today is #RareCancerDay!

Posted at October 10, 2019 08:32 am by Laura Mullen

The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition, the goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support.

“I’ve never heard of that!” is often the response people living with rare cancers hear… Read More

September 29, 2019

TOPIC: Events, Featured News, Medical, Patient Stories

Amish Community Testimony

Posted at September 9, 2019 07:33 am by Valaree DonFrancesco

Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20.

Written By Debbie Drell, Director of Membership, NORD

There are ostensibly 257 PKD patients in the world, but just 140 miles north of where we sit here today, you’ll find a community where PKD is not rare. The Amish community of “Big Valley”… Read More

September 27, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Nicole’s story

Posted at September 9, 2019 10:05 am by Laura Mullen

My name is Nicole and I was diagnosed with Stage 3 sarcoma cancer in July 2017 at the age of 27. It was bizarre being diagnosed with cancer in the first place, but to be diagnosed with a cancer I had never heard of was even more odd. It took me a solid month before I could… Read More

September 20, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: Graeleigh’s Story

Posted at September 9, 2019 09:50 am by Laura Mullen

Graeleigh was diagnosed with fibrolamellar after a long battle with stomachaches. First the stomachaches started out sporadically but by the time she was diagnosed they where becoming chronic, happening almost every day.

Graeleigh had her annual well child check with her pediatrician in November of 2018. Besides the usual, making sure she is getting enough calories… Read More