Like many people in the rare cancer advocacy world, I entered my own advocacy work unexpectedly, and through the experience of a family member. In my case, it was through my brother-in-law Paul, who was diagnosed with cholangiocarcinoma at 38 years old. He started TargetCancer Foundation in response to his own experience facing a rare cancer with no treatments and little research. After his death, many of his family members, including myself, decided to continue his work. Leaving a career in the financial world, I had little knowledge of rare cancers besides my own family experience, and knew even less about advocacy.
One of the first places I turned to was the National Organization for Rare Disorders (NORD). NORD’s own resources and programming, as well as its extensive network of organizations focused on rare diseases, proved to be extremely valuable to me as I started this work. I quickly learned that rare diseases share many challenges with rare cancers, but there were additional challenges unique to rare cancers. While NORD provides critical resources for rare diseases broadly, there were many rare cancer focused organizations, like TargetCancer Foundation, who would benefit from a greater focus on their unique challenges.
Based on this, my colleague and fellow rare cancer advocate John Hopper and I worked together with NORD in 2017 to create the NORD Rare Cancer Coalition — the first coalition of rare cancer advocacy organizations, which today is comprised of more than 30 organizations. While the RCC has many notable accomplishments, the one that we are most proud of is Rare Cancer Day, held annually on September 30.
Our goal in establishing Rare Cancer Day was to create an opportunity for all rare cancer stakeholders to raise critical public awareness for rare cancers. Patients, caregivers, advocates, physicians, researchers, pharmaceutical companies, government regulators, and anyone impacted by rare cancers now have a day that is focused on their unique experiences and challenges.
Needless to say, from the first Rare Cancer Day in 2018, we knew that the effort was a success and was filling a major gap in rare cancer awareness. From the beginning, our goal was not to “own” Rare Cancer Day in any way, but to establish it and let it take on a life of its own. Each year, it is incredibly gratifying to see the reach of this day grow in size and extend outside the US, and we are excited to see it continue to grow in the years ahead.
This year, we are truly proud to announce that once again, a bipartisan resolution acknowledging Rare Cancer Day was presented to Congress, and I am grateful to Reps. Mike Kelly (R-PA), Brian Fitzpatrick (R-PA), Derek Kilmer, (D-WA), Debbie Wasserman Schultz (D-FL), Debbie Dingell (D-MI). for their work on behalf of patients with rare cancers. You can read the entire resolution here, and I hope you will join me in sharing this great news, and raising awareness of rare cancers today!