Rare Cancer Coalition^® Accomplishments

Current Accomplishments (2022 – 2024)

• A Congressional Resolution to recognize Rare Cancer Day: Due to the advocacy of the Rare Cancer Coalition, specifically co-chairs John Hopper and Jim Palma, 2023 marked the first year that Rare Cancer Day made a mark on Capitol Hill! Representatives Brian Higgins (NY-26), Mike Kelly (PA-16), Derek Kilmer (WA-06), and Brian Fitzpatrick (PA-01), Co-Chairs of the bipartisan House Cancer Caucus, introduced a resolution to recognize September 30, 2023, as Rare Cancer Day.
• A spotlight on research: Rare Cancer Day had many activities in 2023, including a special webinar, “Barriers, Breakthroughs, and Progress in Rare Cancer,” which featured a panel of research leaders in rare oncology. The head of NIH MyPART, Abby Sandler joined Kelly Mercier of the Desmoid Tumor Research Foundation in a talk moderated by TargetCancer Foundation CEO and RCC Co-Chair Jim Palma. Watch the recording [insert link]
• A New Collaboration with NIH The coalition officially formed a collaborative partnership with the NIH National Cancer Institute’s MyPART network as an Advocacy Partner. The “My Pediatric and Adult Rare Tumor” network is comprised of scientists, patients, family, advocates, and providers who want to help find treatments for rare cancers.
• Rare Cancer Highlighted at NORD’s Rare Diseases and Orphan Products Breakthrough Summit – At the 2022 Summit, the Rare Cancer Coalition supported the development of a panel workshop spotlighting the mental health issues around a rare cancer diagnosis” which included a youth patient advocate and an oncology leader at NIH National Cancer Institute. In 2023, NORD hosted a Rare Cancer Coalition reception which brought together nearly 60 leaders in oncology including FDA, NIH, industry and dozens of rare cancer patient advocacy leaders, as well as a lunch roundtable session focused on rare cancers.
• DOD Research Funding: The Department of Defense (DoD) continues to approach NORD’s Rare Cancer Coalition membership to provide formal presentations on research funding from the Congressionally Directed Medical Research Programs (CDMRP).
• The Coalition continues to maintain major presence exhibiting at the American Society for Clinical Oncology (ASCO) RCC members had the opportunity to interact and gain visibility among the 38,000 oncologists and key stakeholders in attendance.
• Global Awareness:For Rare Cancer Day 2022 and 2023, NORD reached out to more than 100 rare cancer organizations to share their stories and participate in Rare Cancer Day during September.
• Outreach to the Medical Community:NORD partnered with Medscape, on Rare Diseases Report: Cancers, published in June of 2023. The goal of this publication is to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals. NORD used the opportunity to spotlight the insights and perspectives of oncologists from our Rare Disease Centers of Excellence including Indiana University School of Medicine, University of Pennsylvania, Northwestern University and Nationwide Children’s Hospital.
• Health Care Provider Education:NORD and the Rare Cancer Coalition has produced over 22 continuing medical education (CME) modules on rare cancers in collaboration with PlatformQ Health, providing updates on new therapies and treatment approaches. In 2022, we expanded offerings for AL Amyloidosis, Paroxysmal Nocturnal Hemoglobinuria (PNH), Cold Agglutin Disease, Graft versus Host Disease (GvHD), Waldenstrom’s Macroglobulinemia, T-Cell Lymphoma, and Hodgkins Lymphoma. In 2023, we expanded our CME to include Desmoid Tumors, Mantel Cell Lymphoma, Pediatric Hodgkins Lymphoma. We plan to expand in 2024 to educate physicians on an additional CME for GvHD, Diffuse Large B-Cell Lymphoma (DCBCL) and more. Additionally, NORD also offers rare disease reports and educational videos on rare cancers as well as sessions inclusive of rare cancer topics at the annual NORD Summit.

Historical List of Accomplishments:

2016:

• NORD hosts first “Rare Cancer Roundtable” at NORD’s Rare Diseases and Orphan Products Breakthrough Summit (Summit) bringing together 15 leaders, advocates and stakeholders

2017

• Rare cancer is featured at two roundtables at NORD’s Summit drawing over 50 attendees

2018

• Rare Cancer Coalition is officially launched as a program under NORD’S Membership Committee. NORD’s Rare Cancer Coalition debuts first formal panel workshop at the Summit featuring stakeholders across foundations, industry, government and research institutions
• Coalition establishes major presence exhibiting at the American Society for Clinical Oncology (ASCO) RCC members had the opportunity to interact and gain visibility among the 38,000 oncologists and key stakeholders in attendance.
• Department of Defense announces funding mechanism specifically focused on rare cancers .
• Rare Cancer Coalition comprises 21 of NORD’s Member Organizations dedicated to 57 rare cancers

2019

• DOD Research Funding: NORD launches collaboration with the Department of Defense Peer Reviewed Cancer Research Program (PRCRP) under the Congressionally Directed Medical Research Programs
• NIH Collaborations: For the first time, a panel dedicated to rare cancers was held at the National Institutes of Health Rare Disease Day, with RCC executive leadership speaking on the panel to an audience of over 2,000 in-person and on live-stream.
• Global Drug Development: For the first time at the World Orphan Drug Congress – USA, an entire track at this conference was dedicated to rare cancers. RCC executive leadership and coalition member organizations served on multiple panels.
• International Presence: RCC expands its presence internationally as executive leadership leads a panel and workshop around the benefits of building a coalition in rare cancers.

2020:

• A Seat at the Department of Defense: The coalition secured representation at a special stakeholder meeting of the Department of Defense (DOD) regarding its Congressional-Directed Medical Research Program which works to determine the direction of new research funding for rare cancers.
• Global Education and Awareness: The Coalition announced its second annual Rare Cancer Day, with a theme highlighting the value of genomic testing in helping patients find targeted therapies. The coalition unified the voices of the rare cancer community around the world with thousands of engagements, nearly 150,000 impressions across NORD’s social media platforms and a potential reach of 2.7 million with the #RareCancerDay.
• National Recognition from FDA: In October, during the NORD Rare Disease and Orphan Products Breakthrough Summit, then-FDA Commissioner Stephen Hahn recognized the Rare Cancer Coalition^® and our Listening Session with the FDA Oncology Centers of Excellence in his keynote address at the NORD Summit.
• Health Care Provider Education: Members of the Rare Cancer Coalition^® contributed to a Rare Cancer Congress, consisting of four CME sessions on rare blood disorders and five CME sessions on rare solid tumors. To date 780 health care providers have participated in the education. Sessions are available online through October and November of 2021.
• COVID19 Listening Session with FDA: The coalition collaborated with the Oncology Center of Excellence (OCE) at the US Food and Drug Administration (FDA) on a new initiative to exchange information regarding how COVID-19 has impacted rare cancer drug development, and the ways in which FDA and the entire stakeholder community are working to address the challenges that are emerging, particularly with respect to the conduct of clinical trials in rare oncology.
• Outreach to the Medical Community: NORD partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Cancers, published in late 2020. The goal of this publication is to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals. The Rare Disease Report: Cancers featured articles about recent NORD research to document the impact of COVID-19 on the rare disease community. Editors interviewed rare disease medical experts in oncology from Dana-Farber Cancer Institute, Harvard Medical School, University of California at San Diego and Moores Cancer Center.
• Patient and Caregiver Education: In the fall of 2020, the coalition hosted an educational webinar on genomic testing and personalized care featuring a genetic counselor from Dana Farber and the Branch Clinical Director of Pediatric Oncology at NIH. Along with patient advocate speakers and coalition leadership, they spoke on the utility of these diagnostic tools in treatment of rare cancers.

2021

• DOD Research Funding: Staff at the Department of Defense (DoD) approached NORD and gave a formal presentation to the Rare Cancer Coalition membership to inform this important network on the increased research funding from the Congressionally Directed Medical Research Programs (CDMRP) and a new DoD research grant proposal. Other stakeholders related to the DoD CDMRP also approached NORD and spoke to the coalition to encourage rare cancer applications to become Consumer Reviewers in their CDMRP medical research review process.
• Global Awareness: For Rare Cancer Day 2021, NORD’s Rare Cancer Coalition® launched the theme of “access,” which was all encompassing and included access to trials, diagnostics, clinical care, specialists, medical records, etc. NORD reached out to more than 100 rare cancer organizations to share their stories and participate in Rare Cancer Day during September. 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.
• Global Awareness and Education: 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: Margarita Raygada, PhD of the NIH National Cancer Institute, Simron Singh, MD, MPH of the Odette Cancer Center at Sunnybrook Health Sciences Centre, and Robert Taylor of the Life Raft Group & SWOG Cancer Research Network.
• Health Care Provider Education: 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 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. 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.
• FDA Collaborations: The FDA Oncology Center of Excellence (OCE) approached NORD’s Rare Cancer Coalition to encourage submissions of projects to their Broad Agency Announcement (BAA), a research funding method that funded several projects (including oncology-related projects) and was open to private sector and academic institutions. The BAA results in a research contract for up to 5 years and funds basic and applied research rather than non-research projects.
• Outreach to the Medical Community: NORD partnered with Frontline Medical Communications (FMC), a division of Medscape, on Rare Diseases Report: Cancers, published in late 2020. The goal of this publication is to promote awareness of rare diseases, current research and state-of-the-art treatments among physicians and other medical professionals. The Rare Disease Report: Cancers featured articles about recent NORD research to document the impact of COVID-19 on the rare disease community. Editors interviewed rare disease medical experts in oncology from Dana-Farber Cancer Institute, Harvard Medical School, University of California at San Diego and Moores Cancer Center.