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Sep. 28, 2022

TOPIC: Press Releases, Voices of Rare Cancer

Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Posted by Rohan Narayanan

Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients with rare cancers face and to unify individuals living with rare cancers for awareness and early diagnosis.  

“In 2018, Rare Cancer Day was established as a global commitment to establish effective treatment options for all rare cancers,” said Jim Palma, Co-Chair of NORD’s Rare Cancer Coalition™ and Executive Director, TargetCancer Foundation. “Now in our fourth year, we are grateful for the continued opportunity to establish partnerships, raise awareness, and drive community action to build a bright future for individuals, organizations, and families facing cancer.”  

NORD is asking the world to commemorate the day by using the #RareCancerDay hashtag on social media, posting messages of support for the community and sharing/retweeting facts about rare cancers.  

  • Approximately one in five people living with cancer in the United States are diagnosed with a rare cancer.  
  • All pediatric cancers are rare.  
  • The five-year survival rate is lower for patients with a rare cancer than for those diagnosed with a more common cancer.  
  • Efforts to increase awareness of rare cancers among patients and clinicians could lead to earlier detection and improvements in survival. 

“The Rare Cancer Coalition is thrilled to propel a robust conversation on social media and in the public sphere to celebrate the 4th annual Rare Cancer Day,” said John Hopper, Co-Chair of NORD’s Rare Cancer Coalition™ and President Emeritus, Fibrolamellar Cancer Foundation. “Our goal is to strengthen our community, propel research and therapies, and inspire stories so that one day a Rare Cancer Day is obsolete.”  

Throughout the months of August and September, NORD has highlighted the inspiring stories of the rare cancer community on the NORD blog. For more information on #RareCancerDay or to download public resources, including a social media toolkit, visit NORD’s website. 

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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 in the United States. 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. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.