Written by Lisa Sencen on October 1, 2019
NORD’s Rare Cancer Coalition is the only united group of rare cancer advocacy organizations in the United States. The objective of the coalition is to form a close-knit, multi-stakeholder community to work collaboratively on issues that the greater rare cancer community faces.
In 2019, the coalition will host the first Rare… Read More
Written by Laura Mullen on August 30, 2019
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… Read More
Written by Laura Mullen on August 21, 2019
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… Read More
Written by Lisa Sencen on May 20, 2019
Serving his eighth term in Texas’ 10th Congressional District, Congressman Michael McCaul has achieved significant advancements for the rare disease community. In particular, Congressman McCaul has been a strong supporter of pediatric cancer patients and their families. Over the course of his… Read More
Written by Lisa Sencen on August 23, 2018
The following is a guest blog post from John Hopper, President of the Fibrolamellar Cancer Foundation, a NORD Member Organization.
Huge thanks to NORD leadership! Fibrolamellar Cancer was just approved as one of the Social Security Administration Compassionate Allowance diseases. Why? Because great people… Read More