Every rare disease patient deserves to be seen, heard, and believed.
RareRising
RareRising walks alongside rare disease leaders and organizations so every patient, no matter who they are or where they live, gets the diagnosis, access, treatment, and care they deserve.
Success is a ripple effect — start the wave.
Success is a ripple effect — start the wave.
We Get It
Leading a rare disease organization is hard. You shouldn't have to do it alone.
Most rare disease organizations are started by the people who live it — a parent, a patient, a sibling, a nurse who couldn’t look away. You became a founder because your community needed you, not because you dreamed of running a nonprofit. And suddenly you’re expected to be the strategist, the fundraiser, the board expert, and the advocate — all at once, often with no training, no staff, and no roadmap.
That’s where we come in.
How We Help
RareRising meets your organization exactly where it is. There's no rigid pipeline and no one-size-fits-all program. You get what you need, when you need it, whether that's a mentor's guidance, a safe place to test a new idea, or the operational backbone to keep growing.
BUILD – RareInc
Mentorship and coaching for rising leaders. We help you move from vision and urgency to a strong, sustainable organization.
TEST – RareLabs
A safe place to try bold new ideas. We pilot, research, and prove what works — together — before you bet your organization on it.
GROW – RareSoar
Where proven ideas take flight. RareLabs pilots that work launch here as full programs, and coalitions get the fiscal sponsorship, back-office support, and steady backbone to focus on their communities.
Not sure where you fit? Start here.
Our Promise
Mission: We strengthen rare disease leaders and organizations so every patient, especially in historically marginalized and underserved communities, has access to the advocacy, research, and culturally competent care they deserve.
Vision: A collective movement where every rare disease patient has equitable access to the therapies, cures, and supports needed to thrive.
Our promise to the community: We eliminate barriers and pave the way for nonprofits to advocate powerfully for their communities. We are the mentors and backbone that help you stand firm in the face of adversity, and the loudest cheerleaders when you win.
Read Our Impact Stories
When rare leaders rise, communities rise with them.
IgAN’s Go Global program surpasses expectations!
Rare Disease Facts
34% of Americans are inadequately insured, while 9% are completely uninsured
30% born with a rare disease will not live to see their 5th birthday
1:10 American suffer from a rare disease
Approximately 2/3 of Americans with rare diseases are children
Genetic testing could help diagnose many rare diseases
85% of rare diseases are genetic
The economic burden of rare disease reached nearly $1 Trillion in the US
1 in 2 rare diseases don’t have a foundation or research support group
Rare disease patients experience significantly more anxiety & depression
Only 5% of rare diseases have treatments
95% of rare diseases lack an FDA-approved treatment
On average, a rare disease is misdiagnosed 2-3 times
We'd Love To Hear From You!
Contact us for more information about RareRising and our work.
