Rare Cancer Day 2020

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, including the ACPMP Research Foundation. Rare Cancer Day is observed on September 30, 2020 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.

The Rare Cancer Coalition invites you to spread the word about all rare cancers and the emerging treatment tools currently available, such as genomic testing. How many times have people living with rare cancers gotten “I’ve never even heard of that!” as a response when sharing their diagnosis? Living with an uncommon cancer may leave you feeling isolated, but although you are rare, you are not alone!

What you should know before September 30th:

  1. “Voice of Rare Cancer” Series is live! A new rare cancer patient story is posted each week, to check them out, go to the Rare Cancer Day webpage. One story features our very own Appendix Cancer/PMP patient, Jeremy, who shares his experience with pseudomyxoma peritonei (PMP) and the role genomic testing has played in his treatment.
  2. Genomic Testing and Personalized Care for Rare Cancer Webinar will be held on Rare Cancer Day, September 30th @ 2:00pm ET. Register here!
  3. NORD #RareCancerDay Facebook Live on September 30th will feature the organizations that make up the Rare Cancer Coalition, including ACPMP!
  4. Raise awareness by sharing the Rare Cancer Day Infographic 2020 and use the hashtag #RareCancerDay

Genomic testing can identify biomarkers to target specific types of cancers and help prevent normal cells from being harmed by therapy and reduce side effects. Knowing which biomarkers are driving a patient’s tumor growth could open the door to personalized treatment options, including access to clinical trials that may give patients the chance to live well and longer.

Genetic vs genomic testing – what’s the difference? Genetic testing is done using a sample of blood, urine, saliva, hair, amniotic or other body fluid, to test for inherited mutations from your parents that could increase your risk for certain types of cancer. Genomic testing checks your tumor cells for biomarkers to help form a treatment plan.Identifying molecular and genetic testing is critical for matching patients up with new therapies being developed. We need to understand them and make sure our AC/PMP patients are being tested for them. If you have been diagnosed with cancer, talk to your oncologist about genomic testing.

Join the zebra herd and spread the word about rare cancers and genomic testing this #RareCancerDay (September 30th)!