Rare Disease News

Voices of Rare Cancer: McKinnon’s Story

Published October 1, 2019 by NORD

Categorized in -

This is my story about NF2. This journey began when I was 16 and got hit in the head from a volleyball. I went into a routine MRI and came …

Continue reading “Voices of Rare Cancer: McKinnon’s Story”

Voices of Rare Cancer: Aidan’s Story

Published October 1, 2019 by NORD

Categorized in -

My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to …

Continue reading “Voices of Rare Cancer: Aidan’s Story”

Voices of Rare Cancer: Lauren’s Story

Published October 1, 2019 by NORD

Categorized in -

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 …

Continue reading “Voices of Rare Cancer: Lauren’s Story”

Today is #RareCancerDay!

Published October 1, 2019 by NORD

Categorized in -

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 …

Continue reading “Today is #RareCancerDay!”

Amish Community Testimony

Published September 29, 2019 by NORD

Categorized in -

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 According to the NIH, …

Continue reading “Amish Community Testimony”

Voices of Rare Cancer: Nicole’s story

Published September 27, 2019 by NORD

Categorized in -

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 …

Continue reading “Voices of Rare Cancer: Nicole’s story”

Voices of Rare Cancer: Graeleigh’s Story

Published September 20, 2019 by NORD

Categorized in -

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 …

Continue reading “Voices of Rare Cancer: Graeleigh’s Story”

Voices of Rare Cancer: Paul’s Story

Published September 13, 2019 by NORD

Categorized in -

Looking back, my symptoms started as early as age 10. I lived in a heightened state of anxiety, and every day stresses seemed to become gradually more unmanageable. I didn’t …

Continue reading “Voices of Rare Cancer: Paul’s Story”

Voices of Rare Cancer: Kristin’s Story

Published August 30, 2019 by NORD

Categorized in -

This story is my rare cancer syndrome journey. I have a rare genetic illness called PTEN hamartoma tumor syndrome, which was diagnosed in 2011 after I was diagnosed with thyroid …

Continue reading “Voices of Rare Cancer: Kristin’s Story”

Rare Caregiver Respite: Beth’s Story

Published August 2, 2019 by NORD

Categorized in -

Patient Stories

Earlier this year, NORD launched the first-of-its-kind Rare Caregiver Respite Program, designed to enable caregivers to take a much-deserved respite. Beth Pruitt, caregiver for her daughter and one of the …

Continue reading “Rare Caregiver Respite: Beth’s Story”

Rare Disease News

Access State Report Card Data