Meeting Archive:
Rare Cancers: Facts, Challenges and Patient Stories

Meeting Description:
Rare Cancer Day will be observed on October 1 to highlight the challenges of people living with rare cancer, to unify individuals living with rare cancers, and to raise awareness about early diagnosis. 
NORD will gather a panel of speakers including an American Cancer Society researcher, rare cancer advocates and rare cancer patients to discuss the state of rare cancer in America and share stories of rare cancer diagnosis and survival. 
Please join us for this free webinar on Tuesday October 1, from 1pm-2pm EDT. 
Date: Tue, Oct 1, 2019
Time: 01:00 PM EDT
Duration: 1 hour
Host(s): National Organization for Rare Disorders
 Presenter Information
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John Hopper is the co-chairman of NORD’s Rare Cancer Coalition, co-chair of GI Cancers Alliance (the world’s largest patient- focused foundation for GI Cancers), board director of the National Pancreas Foundation and President of the Fibrolamellar Cancer Foundation (FCF).   Prior to joining the FCF, John served in CEO and Managing Partner positions with healthcare and marketing communications conglomerates including WPP Group’s Ogilvy Health, Interpublic’s McCann Healthcare, and Publicis. His clients include Pfizer, BMS, AbbVie and Genentech, to the American College of Cardiology, National Institutes of Health, American Diabetes Association, Larry King Cardiac Foundation and many more. 
John was a pioneer in partnering sports and entertainment celebrities and properties with health and wellness campaigns, working with the MLB, NFL, NBA, NHL and many sports and entertainment celebrities. He is a graduate of the College of the Holy Cross and Oxford University’s executive MBA program.

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Carol DeSantis, is a cancer epidemiologist and Principal Scientist in the Surveillance and Health Services Research Program at the American Cancer Society. Ms. DeSantis' main research focus is examining trends in breast cancer occurrence, with an emphasis on monitoring progress in reducing racial and ethnic disparities. In addition, she has recently authored in-depth reports on rare cancers in adults and cancers in the oldest old that were featured topics in ACS’ annual flagship publication, Cancer Facts & Figures. Ms. DeSantis has authored more than 40 peer-reviewed publications and several book chapters.

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Kristin Anthony is a two-time cancer survivor and President and Founder of the PTEN Hamartoma Tumor Syndrome Foundation, working to raise funds for research and to educate the public about PTEN hamartoma tumor syndrome and the lack of research funding for this rare disease

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Nicholas Lindeback is diagnosed with Type 2 Neurofibromatosis, a rare genetic disorder affecting 1 in 25,000 people worldwide. His first symptoms occurred at age 3 when he began to walk abnormally. Doctors discovered a tumor in his lower spine causing his foot to drop. Years later, a spot on his stomach turned out to be a tumor confirming his NF2 diagnosis.   
Since his diagnosis, Nicholas underwent three major surgeries, including a tendon transfer/foot reconstruction and a tumor removal from his upper spine. He is currently recovering from brain surgery for a Grade 3 anaplastic ependymoma. He is beginning six weeks of daily radiation treatments. Nicholas will likely need a fourth surgery to remove a tumor in his shoulder that is causing atrophy in his right arm and hand.  Nicholas's future is uncertain, but he is a fighter. He loves to ride his bicycle, play the drums, and spend time with his family and golden retriever Finnegan.

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Katie Kowalski is the Senior Manager for NORD’s Educational Initiatives.  In that role, she works to develop and implement educational programs for medical professionals, patients and their families.  She serves as a Program Manager for key programs within NORD’s Education Department including continuing medical education, the educational webinar series and student programs. 
Katie is a public health professional.  Prior to joining NORD she spent 15+ years at Project HOPE where she oversaw philanthropic programs for rare and non-communicable diseases aimed at improving health, strengthening medical skills and improving access to medical services.