Upequity conducts research projects and forms evidence-based recommendations that impact changes in policy, processes, and systems for the betterment of families living with rare and serious chronic diseases.

With a spotlight on bringing the needs of underserved communities forward, Upequity prioritizes work serving women, communities of color, LGBTQIA+ communities, the elderly, disabled, rural and economically disadvantaged families living with rare and chronic 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.

Upequity’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.

“We need to count rare diseases in order to make rare diseases count!”

– Khrystal Davis 2022, founder of Texas Rare Alliance

Our research projects typically integrate both quantitative and qualitative research. We often conduct focus groups, interviews, literature reviews, surveys, and assessments in both English and Spanish. Our research projects are Institutional Review Board (IRB) approved.

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

Current and upcoming projects include:

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. A Pilot in North Carolina is underway and in 2023 we look to advance efforts in 5-7 other states.

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

Diversity and Equity in Rare Disease Literature 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 is a scoping review conducted in partnership with NOORDA College of Osteopathic Medicine.

Perspectives of Patients (POP) Study

The Perspectives of Patients (POP) study will conduct 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.

“Navigating the diagnosis, care, treatment, trials, and lives of individuals with hemophilia has its share of challenges. Much can be learned through listening, documenting, and understanding the experiences of underserved communities,” said Kim Phelan, COO of The Coalition for Hemophilia B.

The POP project will look 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,” noted Kimberly Haugstad, CEO of Upequity.

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. Recommendations and solutions will be designed to address the most critical issues raised by patients and caregivers in diverse communities. The data and understanding of critical needs and gaps gained will be used to inform the Coalition for Hemophilia B and its partners to champion change efforts.  “In order to best serve all members of our community with the highest level of treatment, we must have a better understanding of the way different groups in our community are treated,” stated Kim Phelan.

Diversity, Equity and Inclusion Efforts in Rare Disease Organizations Project

DEI Survey Cover

We are conducting 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 will gather information on current efforts among rare disease patient organizations to reach diverse populations. This assessment will include a survey directed to patient advocacy organizations and qualitative interviews of a limited number of key leaders. Survey results will be analyzed and used to inform the development of best practice tools, education, and resources to improve outreach and communication to diverse populations. This project is a collaboration with the Rare Disease Diversity Coalition.

We are excited to offer the full 36-page “A Report of Survey Findings: Diversity, Equity, and Inclusion Efforts in Rare Disease Organizations” released on 02/28/2023 for free download.

Rare Hands Unite Project

Many diseases have incredibly small numbers, n’s of 1000, 100 or even fewer, making obtaining a share of voice in state and national healthcare space incredibly difficult. However, the collective estimate of 30M people living with rare diseases in the US is a significant 10% of the population. If family household members impacted are included, rare disease numbers reach near 30%. Through this collective voice, the vast needs of patients are more effectively heard.

Real-world evidence regarding what happens in everyday practice for patients and their families is increasingly being valued by payers and regulators. Patient-reported outcomes data that depicts the impact of diagnosis, care, treatment and therapies, symptoms, daily activities, and quality of life are key to building this evidence.

This project builds an on-line process to collect and provide ongoing real-time patient-reported outcomes. Data collection will identify commonly reported access issues across rare disease that can be improved via policy or process fixes to drive better access for rare disease care, treatment, and therapies. Data collected will identify ongoing barriers that adversely impact patients and be reported on an ongoing basis so emerging issues will arise in real-time.

This project will review the existing known practices and data of effective transitions and then conduct a series of patient and family caregiver focus groups and key stakeholder interviews with HCPs to identify key needs, report and recommend changes to strengthen policy and systems for transitioning rare patients.

Pediatric to Adult Transition Research

There is limited research that addresses the transition period of pediatric to adult patients in rare diseases. However, what does exist and what we anecdotally know to be true is that there are few programs and limited support to transition into adult healthcare for patients with rare diseases and their families.

There is a need to build a greater understanding of the challenges in the transition process. There is also a need to develop more robust interventions that address the needs of young adults and their families as they engage in medical decision making within the vast spectrum of varying severity of diseases, disabilities, and comorbidities.

Data is needed to better understand and document the perspectives of patients, families, and health care practitioners (HCPs) which can inform possible policy and system changes to improve the lives of transitioning patients.

Additional Projects

During the year, we add new projects that address key underserved communities. We are actively reviewing other underrepresented research areas in rare disease including women, caregivers, aging adults, siblings, and our LGBTQAI+ populations.

Please contact us to discuss additional research of interest at