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Sep. 29, 2021

TOPIC: Press Releases, Voices of Rare Cancer

Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Posted by Rohan Narayanan

Washington, DC, September 29, 2021 Tomorrow, the rare disease community will celebrate the third 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 face and to unify individuals living with rare cancers for awareness and early diagnosis. NORD’s Rare Cancer Coalition, composed of 27 NORD member organizations, was formed in 2017 to collaborate on issues facing the greater rare cancer community. 

The Rare Cancer Coalition is proud to unite more than two dozen organizations working in rare cancers to collaborate, host important conversations and celebrate Rare Cancer Day,” said John Hopper, Co-Chair of NORD’s Rare Cancer Coalition™ and President, Fibrolamellar Cancer Foundation. “Together, let’s continue to strengthen our community and its individual members through capacity building, networking, peer to peer mentoring and shared discoveries.  

On Thursday, September 30 at 2pm ETNORD is hosting a free webinarRare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research to explore rare cancer challenges and offer insights to assist those who are impacted. Registration is still open! NORD is also 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. 

“Rare Cancer Day is an important day for advocacy, fundraising and awareness of rare and deadly cancers and the issues people living with them face,” said Peter L. Saltonstall, President and CEO of NORD. “Increasing awareness of rare cancer symptoms could lead to improvements in survival for individuals living with rare cancers. Members of the rare community, I urge you to tell your story, and together we can drive innovation to discover treatments and cures for 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 cancer symptoms in patients and clinicians could lead to earlier detection and improvements in survival. 

Rare Cancer Day is a celebration of the inspiring stories of patients, families and physicians, but so too is it a commitment to establishing a brighter future,” said Jim Palma, Co-Chair of NORD’s Rare Cancer Coalition™ and Executive Director, TargetCancer Foundation. “Today is about awareness, action and a reminder of how much further we have to go to establish effective treatment options for all rare cancers. 

Throughout the months of August and September, NORD has highlighted the powerful, important, and inspiring stories of the rare cancer community on our blogRare Cancer Day is sponsored by Foundation MedicineFor more information on #RareCancerDay or to download 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 15,000 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.