WASHINGTON, Sept. 16, 2020 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) has announced the second annual Rare Cancer Day, taking place September 30, 2020. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed to bring attention to the challenges patients and caregivers face, raise awareness of the need for greater research funding, early diagnosis and patient support, and unify individuals living with rare cancers.
This year, NORD and the Rare Cancer Coalition are highlighting the value of genomic testing in helping patients find targeted therapies. Genomic testing is a diagnostic test which checks tumor tissue and blood for targetable biomarkers, opening the door to the possibility of effective, personalized treatment options and helping patients to potentially avoid large scale, damaging chemotherapy.
Leading up to Rare Cancer Day, information on genomic testing, rare cancer patient stories, videos and more will be shared. On September 30, NORD will ask the world to commemorate the day by using the #RareCancerDay hashtag, posting messages of support for the community and sharing/retweeting facts about rare cancers and genomic testing in order to spread awareness and foster education. A free webinar entitled "Just For You: Genomic Testing and Personalized Care for Rare Cancers," featuring two experts and a rare cancer patient, will take place at 2:00pm EDT.
"We are excited to launch our second annual Rare Cancer Day with the goal of shedding light on how genomic testing may help patients facing rare cancers identify targeted treatments," said Rare Cancer Coalition Co-Chairman Jim Palma, Executive Director of the TargetCancer Foundation.
John Hopper, Rare Cancer Coalition Co-Chairman and President of the Fibrolamellar Cancer Foundation went further, "The coalition raises the fact that separately, we are rare, but when we come together, we raise our collective voices—for greater understanding of diagnostic tools like genetic and genomic testing. September 30 will be a terrific day to let everyone living with a rare cancer know they are not alone, and to educate the world at large with life-saving knowledge of genomic testing and personalized therapies."
Visit rarediseases.org/get-involved/rare-cancer-coalition/rare-cancer-day/ for downloadable assets, a social media toolkit, event details and more information on Rare Cancer Day and NORD's 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 more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 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 over 37 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 more than 325 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.
SOURCE National Organization for Rare Disorders (NORD)