Our team is determined to help create a better world for rare. We believe that everyone should be given the best possible chance to live beyond cancer.
We work towards better outcomes for the patients of today and tomorrow by:
Providing limitless support, so no one is left behind or feels alone
We understand that a rare cancer diagnosis can turn a person’s world upside down, and we do whatever it takes to navigate them through the chaos with empathy and compassion.
We deliver support to the rare cancer community that no one else does, in a way no one else does. Our programs support over 1,000 patients and their families each year and from every angle: clinical, emotional, financial and practical.
Last year we connected over 2,500 people through our support groups and distributed more than $158,000 in crisis funding to families. We connected over 200 patients and their families to appropriate services and support around the country and received over 3,800 views of our Rare Cancer Support Guide, designed to help people manage and navigate their unique cancer experience.
Learn more about our cancer support
Driving change in access, affordability, and quality of care
Since 2012, our team has stood side by side with the rare cancer community, amplifying their voices and calling out inequity in healthcare.
We have brought people together to influence meaningful policy change with immediate impacts, and have advocated for research, better access to clinical trials, faster access to funded therapies, and patient participation in decision-making.
Here is a snapshot of how our advocacy is helping to create a better world for rare.
Better patient experiences and outcomes are our north star. And we won’t stop reaching for them until the story and the system changes.
