Our Research

We conduct leading patient-centered research focused on projects that support advancing systems or policies that improve care for underrepresented and underserved populations in rare diseases.

Our Projects

Research is something that everyone can do, and everyone ought to do. It is simply collecting information and thinking systematically about it. - Professor Raewyn Connell*

With a spotlight on bringing the needs of underserved and underrepresented communities forward, Upequity priorities research serving women, communities of color, LGBTQIA+, the elderly, disabled, rural and economically disadvantaged families living with rare and chronic conditions. We conduct research projects and form evidence-based recommendations that impact changes in policy, processes, and systems for the betterment of families living with rare and serious chronic diseases.

High LevelUpequity’s research brings the patient voice to the decision-making table through the collection of real-world data and facts that can be used to inform and impact decisions. Our team has significant rare disease research experience and deep ties to rare and serious disease patients, families, and their community organizations. We also have decades of combined experience working with industry stakeholders such as providers, government agencies, payers, and others.

Our  studies tend toward mixed method strategies that gather and analyze quantitative and qualitative data. We often conduct focus groups, interviews, literature reviews, surveys, and assessments in both English and Spanish. Studies are IRB (Institutional Review Board) approved and led by researchers and PhD-level professionals. For specific rare disease research, we typically partner and collaborate with experienced patient advocacy organizations in that disease area.

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.

We are always actively reviewing research areas in rare disease. Please contact us to discuss your research ideas!

*Social psychologist known for her work on gender and transgender studies


Current Projects

All Upequity research is intended to advance the needs of rare and chronic disease families
Rural Farmer

Rural Rare Disease Community Access Project

It is widely accepted but not well studied that healthcare is not equitable for rare disease families living in rural communities. Access to diagnosis, treatment, care, specialists, and clinical trials are likely to be significantly more challenging or even unattainable for rural rare disease families. Among other things, there is a certain burden to the added transportation and time away from home and work costs associated with rural families.

Current and ongoing data in real-time is needed that can be utilized to understand, document, and build the case for policy and system changes to improve the lives of rural rare disease families.

To accomplish this work, we partner with existing rare disease advisory councils, state coalitions, and broadly established rural outreach efforts. This includes reviewing and coordinating with state administration efforts.

Specific areas of interest are access topics such as:

  • Health Literacy
  • Health Insurance Coverage
  • Provider Accessibility
  • Home Health Services
  • Mental Health Services
  • Distance and Transportation
  • Broadband Access
  • Trust and Privacy Issues

Current pilot work is being conducted in North Carolina and Wisconsin.

Rare Disease Advisory Council Map

Supplying Winning Options for Rare Diseases in States (Swords Survey)

This Project will analyze and document the impact of existing state rare disease councils and coalitions as well as review effective state non-rare disease entities. We will use a mixed method approach of detailed qualitative interviews with leaders within rare disease and effective organizational leadership outside of rare disease as well as a qualitative survey of existing state based rare disease councils, coalitions, and other entities. We look to identify structures and designs, strategies, and operational processes that have been proven effective. This will include relationships, reporting and operational structures, administrative functions, budget, etc.

Review laptop

Diversity and Equity in Rare Disease Scoping Review

Currently we are conducting a detailed Rare Disease Health Equity Literature Review to look at the racial and ethnic disparities in healthcare for patients and families diagnosed with rare diseases. This project is conducted in partnership with NOORDA College of Osteopathic Medicine.

Title: Racial and ethnic disparities in healthcare affecting patients and families diagnosed with rare diseases: a scoping review

Available: We plan to submit to a Journal by Q3 of 2023. Any work will be open source. If you would like us to provide you a link once available please sign up below.


Perspectives of Patients (POP) Study

The Perspectives of Patients (POP) study is conducting an analysis to gain a better understanding of the needs of Hemophilia B patients and caregivers from diverse communities through the lens of the patient and caregiver. This is a joint project by The Coalition for Hemophilia B and Upequity.

The POP project is looking at the current state of the healthcare experience for the underrepresented in the Hemophilia B community and will set forth key recommendations for meaningful, sustainable change and improvement. “Our goals are to document areas of needed change that can directly improve the lived experience of patients and caregivers with Hemophilia B” said Kim Phelan, COO of The Coalition for Hemophilia B.

The scope of this project will exclusively focus on individuals and families with Hemophilia B in the United States and its territories. Outreach to communities of color, women, and those underserved by geographical constraints will be a priority focus. The project is being conducted in English and Spanish. Recommendations and solutions will be designed to address the most critical issues raised by patients and caregivers in diverse communities.

If you would like us to keep you updated on this project, please sign up below.

DEI survey cover

Diversity, Equity, Inclusion, and Accountability Efforts in Rare Disease Organizations

In early 2023, we finished up a project with the Rare Disease Diversity Coalition looking at the DEI Efforts in Rare Disease Organizations.

We conducted an audit and analysis of the current state of rare disease patient organizations with a focus on efforts related to outreach, education, and support of rare disease patients of color. This project gathered information on current efforts among rare disease patient organizations to reach diverse populations. This assessment included a survey directed to patient advocacy organizations and qualitative interviews of a limited number of key leaders. Survey results were analyzed and used to inform the development of best practice tools, education, and resources to improve outreach and communication to diverse populations.

You can download the full report here

Our DEIA Research Project provides an ongoing status of the diversity, equity, inclusion, and accessibility (DEIA) journey of patient organizations over time. Aggregate results will be reported in key best practice areas in each assessment period. Findings will be shared widely to celebrate DEIA areas of growth and encourage areas that need improvement. Recognizing it takes time, dedicated hard work, and a commitment to grow and change, we look to provide an ongoing snapshot of the journey of patient organizations. By providing this transparent look at DEIA efforts over time, we look to support the overall process integrating DEIA practices deeply into the fabric of patient organizations.

If your organization is interested in participating in our DEIA research survey, please fill out our Contact Us form and we will notify you once it is ready.