The National Organization for Rare Disorders (NORD® ) advocates for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, etc. Since its inception in 1983, NORD has advocated for marginalized individuals – people living with rare diseases, diagnosed and undiagnosed – who were excluded from conventional clinical care, research, and drug development.
Rebecca Aune
People living with rare diseases often experience a long and arduous journey to diagnosis, due to a dearth of information in medical textbooks, lack of knowledge in the clinical setting, lack of research, and lack of FDA-approved treatments. Furthermore, a substantial amount of research has shown inequity in access to and quality of health care for marginalized groups, especially Black, Brown, indigenous and people of color (BIPOC). The barriers to be accurately diagnosed and provided quality care by specialists already poses threats to quality and length of life of the community at large, but the additional barriers faced by BIPOC communities have deadly consequences due to the lack of access to culturally proficient health care and access to rare disease specialists, in addition to socioeconomic considerations (i.e., insurance access and medical literacy).
Debbie Drell
In addition to further delayed diagnosis and inequities in care, people of color are consistently underrepresented in clinical trials and registries, resulting in a lack of diversity in clinical studies and some mystery in how effective therapies will be across diverse populations of patients. Because many rare diseases are genetic and certain genetic conditions disproportionately affect communities of color, having a vast majority of white participants creates significant knowledge gaps that can affect patient care and drug development and effectiveness.
Unfortunately, when looking at the rare cancer population within the rare disease community, the same problems persist. Of the approximately 7,000 known rare diseases, 1 more than 500 are rare cancers, 2 and combined, all rare cancers account for slightly more than one out of ever four cancer diagnoses each year and one out of every four cancer-related deaths. 3 Black people have the highest death rate and shortest survival of any racial/ethnic group in the U.S. for most cancers, and Black men have the highest cancer incidence rate. 4 NORD and the NORD Rare Cancer Coalition™, including 27 rare cancer member organizations, are committed to shining a light on the causes of these inequities for rare cancer patients, including but not limited to systemic racism, economic disparities, cultural differences, and issues concerning access to quality health care and inclusive research.
To raise awareness of rare cancers and the issues rare cancer patients face throughout the diagnostic odyssey, in seeking and receiving specialized care and in advocating for awareness, and increased research and drug development, NORD and the NORD Rare Cancer Coalition spearheaded Rare Cancer Day, observed annually on September 30. Through the universal hashtag campaign #RareCancerDay and our social media toolkit of infographics and messaging, NORD brings together the global community of advocates to promote awareness of rare cancers and provide opportunities to educate patients, caregivers, clinicians, and researchers. NORD hosted a free webinar for the rare disease community, Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research, to explore rare cancer challenges and offer insights to assist those who are impacted. Throughout August and September, NORD highlighted the powerful, important, and inspiring stories of the rare cancer community on the NORD blog.
In addition, the 2021 NORD Rare Diseases + Orphan Products Breakthrough Summit, held October 18 and 19, featured a breakout session and a follow-up discussion group on Advancing Rare Cancer Awareness & Education Among Healthcare Professionals. These sessions explored educational gaps and approaches for increasing awareness and delivering quality education for healthcare professionals in optimizing care for rare cancer patients, genomic testing, personalized medicine, and collaboration with researchers and patient advocacy groups.
This issue of Rare Diseases Report: Cancers helps us further our mission to foster the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services, as well as the work of NORD’s Rare Cancer Coalition™ which aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community.
NORD remains steadfastly committed to advocating for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, parental status, marital status, political affiliation, gender expression, mental illness, socioeconomic status or background, neuro(a)typicality, or physical appearance. NORD’s work includes advocating for rare cancer patients, raising awareness of rare cancer patients, sharing the stories of people living with rare cancers, and educating patients, caregivers and healthcare professionals about accurate diagnosis, quality care, advancements in research, and available treatment options. Learn more at rarediseases.org.
Rebecca Aune
Director of Education Programs
Debbie Drell
Director of Membership
References
1. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; FAQs About Rare Diseases; 11/30/2017. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
2. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; Rare Cancers; 1/25/2019. https://www.youtube.com/watch?v=ES5KylRT1qY, https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers, or https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers
3. NIH National Cancer Institute. Rare Cancer Statistics | Did You Know? [Video]. Youtube. https://www.youtube.com/watch?v=ES5KylRT1qY&t=155s. Published April 5, 2018. Accessed Oct. 20, 2021.
4. American Cancer Society. Cancer Facts; Figures for African Americans 2019-2021. Atlanta: American Cancer Society, 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf1.