Our Story

We started the way most rare disease organizations do — because it mattered too much not to.

Founded in 2020 as Upequity and reborn as RareRising, we are a 501(c)(3) nonprofit built on a simple belief: the people closest to rare disease are the ones best equipped to change it — they just deserve real support.

We deliver patient-centered research, incubate emerging rare disease organizations, and explore novel solutions that make life tangibly better for rare disease communities. We work to eliminate barriers to diagnosis, access, treatment, and care — and to pave the way for the nonprofits advocating for their communities every single day.

We believe… our different lived experiences and perspectives are essential ingredients to building something strong.

We prioritize… the communities and leaders that too often go unseen.

We succeed by… solving problems together and cheering each other across every finish line.

Our Pledge: To impact health equity by collaborating with families and organizations dedicated to serving underserved communities and supporting leaders from underrepresented groups.

Our Values: Servant Leadership · Authenticity · Innovation · Results · Honesty & Integrity · Inclusion

Interns

Careers and Volunteering

We are committed. We are passionate. We love what we do!

Do you want to end each day knowing you are you exactly where you need? We look forward to exploring the possibilities of whether RareRising is that place!

We’re seeking talented individuals to join our team and help us achieve our goals.

What we offer:

  • Competitive salary and benefits
  • Opportunities for professional growth and development
  • A supportive and inclusive work culture
  • A chance to be part of an innovative nonprofit making a difference

Open positions:

  • Translation Professional (Spanish)
  • Health Equity Researcher
  • Semester College Internships
  • Volunteer opportunities

We look forward to connecting!

Our Commitment To Diversity

“We believe deeply that our unique and different lived experiences and perspectives are essential ingredients to building a strong organization that deeply understands and truly addresses the needs of those we serve.” – Kandyma Sar, Co-founder October, 2020

Our passion for health equity unites us as an organization. We believe in the power of our unique differences and the impact we can make as we come together in our shared values and purpose.

We welcome you! We are building an organization we can be proud of where you can be your true self, utilize your talents and be heard. This is the power of inclusion and enables us to unlock the power of our differences and the potential of our teams.

We succeed by leveraging our differences to solve problems, create opportunities and be stronger together. We encourage, embrace, and value each of us for being our authentic selves.

Equity, inclusion and respect are cornerstones of our culture. At every level our organization reflects the diverse people we serve around the nation. Diversity does not only mean race. It includes race, ethnicity, gender, age, sexuality, religion, disability, socioeconomic status and neurodiversity. We are dedicated to building a thriving organization that welcomes and respects the diversity of different cultural backgrounds, talents, interests and ideas.

Inclusion is built into our organizational practices from recruitment, development, promotion and leadership as well as embedded deeply in our core values. Representation is a continued commitment and one of the ways that we can measure ourselves.

Additional Information

We encourage you to learn more about our organization:
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