Rare Diseases Healthcare Access Study

Rare Disease should not equal rare to find care. Participate in the rare diseases healthcare access study here: http://bit.ly/RDACsurvey

What is the Rare Diseases Health Care Access Study?

The Rare Diseases Health Care Access Study is an online questionnaire survey that takes about 30 minutes. We are looking for participants who are:

  • Adults and caregivers over 18 years and currently residing in the U.S., with a rare disease, disorder or undiagnosed rare condition*.
  • Or, parents/caregivers of children with a rare disease, disorder or undiagnosed rare condition*.

* A disease is generally considered rare if it affects fewer than 200,000 individuals in the United States. A list of rare diseases can be found here: www.rarediseases.info.nih.gov/diseases/browse-by-first-letter Because rare disorders are discovered and prevalence estimates change frequently, you may participate even if your disorder does not appear on the list.

What is the purpose of the Rare Diseases Health Care Access Study?

The Chloe Barnes Advisory Council on Rare Diseases (CBACRD) has created The Rare Diseases Health Care Access Study to change the outcome for Minnesota patients and families living with rare diseases. With better understanding of rare diseases’ barriers to seeking and accessing health care, we hope to remove those obstacles and establish programs and resources.

(Please know, your identity and responses will be kept confidential and will be used only for the research purpose of this study.)

Additional information

If you have questions about the survey contact Council Administrator Erica Barnes at demo0050@umn.edu

Survey Design Team

  • Amanda Hemmesch, PhD – Associate Professor of Psychology at St. Cloud State University. Her primary research focus is on quality of life in chronic and rare conditions across the lifespan. 
  • Kathleen Bogart, PhD – Associate Professor of Psychology at Oregon State University. Researcher on quality of life with rare disorders, advocate, and individual living with a rare disorder
  • Patti A. Engel, RN, BSN – President and CEO, Engage Health, Inc.
  • Tom BlissenbachRPh, MS- Council member, Barriers to care workgroup lead, Consultant for Fairview Pharmacy Services, LLC
  • Lee Jones – Council member, President and CEO Rebiotix, a Ferring company
  • Dr. Arthur A. Beisang III,MD – Council member, Complex Care Pediatrician, Co-Director of Rett and Rett related Disorders Clinic, Co-Director of Aerodigestive Clinic, Gillette Children's Specialty Healthcare
  • Soraya Beiraghi, DDS, MSD, MS, MSD Council member, Professor and Division Chair of the Division of Pediatric Dentistry at the University of Minnesota School of Dentistry, NIH Fellow.
  • Karl Nelsen, PA-C MS – Council member Physician Assistant Fairview Southdale Hospital/Fairview Ridges Hospital, Patient advocate for Ectodermal Dysplasia
  • Erica Barnes, ccc-SLP- Rare Disease Advisory Council Administrator


A Special Thank You to those who provided feedback and guidance throughout the survey development process:

  • Bluespire Marketing
  • Dr. Sheldon Berkowitz, MD- Council member, President of the American Academy of Pediatrics, MN chapter