Mark Your Calendars - October 1 is Rare Cancer Day!

Coalition of Rare Cancer Organizations Launches First-Ever Awareness Day Dedicated to Education, Connections and Hope

WASHINGTON, Aug. 29, 2019 /PRNewswire/ -- 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 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 a 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.

About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with over 275 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.

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SOURCE National Organization for Rare Disorders (NORD)