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August 30, 2019

TOPIC: Featured News, Patient Stories

Voices of Rare Cancer: Kristin’s Story

Posted at August 8, 2019 12:54 pm by Laura Mullen

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 cancer in 2009. I am also a three-time cancer survivor, surviving two melanoma surgeries. I have undergone two preventative surgeries and get colon and kidney screening annually.

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August 21, 2019

TOPIC: Advocacy, Featured News, Get Involved, Sticky Posts for Homepage

Mark Your Calendars – October 1 is Rare Cancer Day!

Posted at August 8, 2019 09:19 am by Laura Mullen

Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face… Read More

August 20, 2019

TOPIC: Featured News

NORD’s Mary Dunkle Comments on Diagnosis Challenges and Urges Caution on Using Internet Sources in New Article

Posted at August 8, 2019 10:52 am by Laura Mullen

In a recent article published by HealthDay entitled “‘Dr. Google’ Helps Some Patients Diagnose a Rare Disease,” NORD’s Mary Dunkle notes common reasons for rare disease diagnosis delays and cautions patients and caregivers regarding online sources, recommending that people “use only trusted sources such as the U.S. National Institutes of Health, teaching hospitals and patient organizations whose information is… Read More

August 14, 2019

TOPIC: Events, Featured News

FDA Acting Commissioner to Deliver NORD Rare Summit Keynote

Posted at August 8, 2019 04:26 pm by Lisa Sencen

We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became Acting Commissioner of FDA earlier this year and previously served as the director of the National Cancer Institute.

In addition… Read More

August 7, 2019

TOPIC: Featured News, Press Releases


Posted at August 8, 2019 10:37 am by Lisa Sencen


The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures for rare diseases.


TUCSON, Ariz. and WASHINGTON, August 7, 2019 Read More