August 30, 2019
TOPIC: Featured News, Patient Stories
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.
August 21, 2019
TOPIC: Advocacy, Featured News, Get Involved, Sticky Posts for Homepage
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
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
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