Jan. 12, 2022
TOPIC: Patients & Members
Posted by Maia Craig
NORD’s Rare Cancer Coalition (RCC) worked hard in 2021 to raise awareness for rare cancers and tackle issues that patients and caregivers face, such as access to care, treatments, and research.
At the start of 2021, NORD and our RCC members partnered with PlatformQ, one of the nation’s leading providers of digital Continuing Medical Education (CME) and targeted patient education, to build a CME library for the rare cancer community. The first annual Rare Cancer Congress was hosted with accredited sessions and included a two-day event with two tracks: rare blood disorders and lymphomas. NORD is thankful for the support from multiple funders across therapeutic areas.
In October 2021, NORD included an engaging rare cancer breakout session at our annual Rare Diseases and Orphan Products Breakthrough Summit. The topic for the breakout session was, “Advancing Rare Cancer Awareness and Education Among Healthcare Professionals” and was selected based upon the Rare Cancer Coalition member’s feedback. NORD received positive evaluations on the session, and we reached participants both in the United States and globally, with attendees from 34 countries participating.
Each year, the big event for the Rare Cancer Coalition is Rare Cancer Day, and 2021 was no exception. Hosted on Thursday, September 30, the theme of Rare Cancer Day 2021 was access, a critical tenant in the rare disease community. The co-chairs of the Rare Cancer Coalition, John Hopper and Jim Palma, collaborated with NORD to bring Rare Cancer Day and its important messages to life with the webinar, Rare Cancers: “Breaking Down Barriers to Diagnosis, Treatment, and Research.” This session included panelists from the NIH National Cancer Institute, Odette Cancer Center at Sunnybrook Health Sciences Centre, Life Raft Group, and SWOG Cancer Research Network. Leading up to Rare Cancer Day, NORD spotlighted inspirational stories from the rare disease community. RCC members, the greater patient advocacy community, individuals, researchers, medical institutions, and biotechnology and pharma companies were all able to recognize the importance of participating in and observing Rare Cancer Day. NORD extends a thank you to Foundation Medicine and all other RCC supporters.
Hopper and Palma were featured in CONQUER: The Patient Voice Magazine with their article, Treating Rare Cancers Can Be Hard: Why Genomic Testing Is Crucial. The article elucidated the difference between genetic testing and genomic profile testing, and how taking steps to get tested can be a game changer for a rare cancer diagnosis. The piece came out in September to bring visibility to the Rare Cancer Coalition and Rare Cancer Day.
Released for Rare Cancer Day, NORDPod featured an episode spotlighting Dan “Dry Dock” Shockley, a rare cancer survivor and retired Navy veteran. Dan was diagnosed with AFAP/hereditary colon cancer within a two-month span and is a testament to how access and early diagnosis can save lives. Dan continues to make a difference in the rare cancer space as he raises awareness, destigmatizes ostomy bags, and leads a high quality of life as someone living with this condition. To hear more about Shockley’s discussion of the positive impact of having access to a quick diagnosis, trained physicians, and ongoing treatment/testing can have on rare cancers, listen here.
Two CEOs/Founders of Rare Cancer Coalition member organizations, David Arons of the National Brain Tumor Society (NBTS) and Mark Laabs of the Rare Cancer Research Foundation (RCRF) were interviewed and featured in NORD’s Head of the Herd blog series. They both discussed the importance of reaching patients from all socioeconomic backgrounds to achieve health equity for rare disease patients. David spoke from a public policy lens about NBTS’s involvement in the Clinical Treatment Act (H.R.913) and the NBTS community participating in the Head to the Hill Day to speak with congressional offices about the importance of brain tumor research and NCI funding. Mark spoke about how RCRF and Pattern.org have been reaching even more patients in the virtual platform before and during the pandemic, as Comprehensive Cancer Centers are able to connect with patients in all parts of the country.
To finish out 2021, NORD’s very own Debbie Drell and Rebecca Aune were featured in MD Edge’s Rare Diseases Report 2021: NORD: Approaching Rare Cancers Through a Diversity Lens. They discussed how the diagnostic odyssey rare cancer patients face due to socioeconomic differences, lack of diversity in clinical trials, delayed diagnoses and inequities in care, and outlined how the RCC, NORD Breakthrough Summit, and Rare Cancer Day have made a difference this year.
In 2022, NORD and the RCC look forward to joining forces with the wider rare disease community for the annual Rare Disease Day on Monday, February 28, as well as continuing to be health equity and DEI advocates for the rare cancer and rare disease patient community.
How Some RCC Members Increased Rare Cancer Awareness in 2021:
National Brain Tumor Society (NBTS): At the state level, NBTS works to ensure that Rare Cancer Day is officially designated. For GBM Awareness Day, they garnered support from the state of Massachusetts, and created a toolkit for their “champions” that included social media campaigns, videos, and more.
Aplastic Anemia and MDS (AAMDS) International Foundation: AAMDS launched the Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry in April of 2021 in collaboration with NORD. The purpose is to study PNH and act as a participant-driven resource to unite the PNH community through shared disease knowledge. The registry will collect data on demographics, quality of life, treatment, diagnosis, and PNH symptoms.