Aug. 29, 2019
Posted by Laura Mullen
Washington, DC, August 29, 2019–The National Organization for Rare Disordersâ“‡ (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 and to unify individuals living with rare cancers for awareness and early diagnosis.
“I’ve never heard of that!” is often the response people living with rare cancers hear when sharing news of their diagnosis. Those living with rare cancers also deal with a lack of available information and effective treatment options, in addition to the isolation, fear, frustration and other overwhelming feelings that can accompany a more common cancer diagnosis. The goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support. Unifying all rare cancer communities and reminding people living with rare cancers they are they are not alone—but are in fact part of a rare but mighty “herd” (borrowing from the analogy of a herd of zebras, the official symbol of rare diseases in the United States)—are key elements of this exciting new campaign.
On October 1, NORD will ask the world to commemorate Rare Cancer Day by posting messages of support for the community and sharing/retweeting facts about rare cancers in order to raise awareness.
“We are excited to launch Rare Cancer Day this year, with the goal of shedding light on how rare cancers can be isolating, difficult to diagnose, and suffer from a lack of research and treatments,” said Rare Cancer Coalition Co-Chairman Jim Palma, Executive Director of the TargetCancer Foundation.
“The coalition raises the fact that separately, we are rare, but when we come together, we raise our collective voices—for research, support and hope,” according to Rare Cancer Coalition Co-Chairman John Hopper, President of the Fibrolamellar Cancer Foundation. “October 1 will be a great day to let everyone living with rare cancer know they are not alone, and to educate the world at large with key rare cancer facts.”
For more information on Rare Cancer Day and NORD’s Rare Cancer Coalition, visit https://rarediseases.org/get-involved/rare-cancer-coalition.