Our Work

Rare diseases, defined as diseases or conditions that affect less than 200,000 people, impact more than 30 million Americans and 400 million people worldwide. Due to the small population and the complex nature of most conditions, rare diseases often have very few options for treatment and many are life-threatening or life-limiting.

There is hope.

In recent years, there has been significant investment in R&D efforts for rare diseases. Hundreds of rare disease-focused clinical development projects are currently in process. These include treatments, ongoing therapies and potentially curative cell and gene therapies. Clinically, specialists continue to deepen their breadth of understanding and knowledge for caring for rare disease patients.

Nonprofit entities serving these rare disease populations vary widely in their size, sophistication, and areas of focus and support. Some focus deeply on raising research dollars, others provide programming and advocacy support or services such as advisory and financial assistance.

Working together is imperative.

Upequity believes that it takes a united effort of many to truly impact lasting change and we are committed to contributing to the collective health equity movement to ensure healthcare is accessible to all who need it.

Upequity is a registered 501c3 nonprofit that delivers patient-centered, evidence-based research and explores novel solutions to positively impact underserved communities with rare and serious chronic health conditions.

Our aim is to engage in work that supports advancing systems and policy changes, eliminating barriers, and producing tangible improvements in people’s lives.

To reach our aim, we explore and advance novel ideas, evidence-based research and incubate emerging entities in their journey to becoming nonprofit organizations. Upequity’s work is focused on underrepresented populations including women, people of color, LGBTQAI+, the elderly, disabled, rural, veterans and those struggling with limited financial resources who live with rare and serious chronic health conditions. Internally, we are deeply committed to practicing what we believe and prioritize leadership opportunities for individuals from diverse backgrounds in our research, programs, projects and within the governance and operations of our organization.

Conduct Patient-Centered Research

Continued rare disease research is needed to identify barriers and challenges that continue to impact the lives of families. Our research priorities are projects that can be leveraged to make evidence-based recommendations that impact changes in policy, processes, and systems.

Build and Test New Ideas

Novel ideas need a launchpad to take off from. We apply what we learn in research directly into practice. Our Lab offers a testing ground where innovative strategies can be piloted, and new initiatives launched.

Incubate & Accelerate other rare nonprofits

It all starts with passion and a dream but without support it is much harder to make that dream a reality. Our Incubate and Accelerate Program support assists aligned startup nonprofits as they journey to become 501c3 entities or existing nonprofits managing significant rapid growth.

For detailed information about our work, please see our Research and Lab pages of our website or reach out to us direct at  info@upequity.org .