Living with rare diseases can be exceptionally challenging, and patients often must deal with years of misdiagnosis on their journey. A common refrain in the clinical trial recruitment industry is that patients are looking for trials and researchers are looking for patients — and nowhere is that truer than in the rare diseases community. Because rare diseases typically have limited treatment options, participating in a clinical trial can benefit patients who are seeking alternatives.
In this roundtable discussion with Derek Low, Product Team Lead, RareLife Solutions; Ben Munoz, Co-Founder, Ben’s Friends; and Nolin Huddelston, Chief Business Officer, Rare Genomics Institute, we delve into the role of medical research in the rare disease space and explore how researchers can better engage with patients. Questions covered include:
- What are some of the main obstacles individuals living with rare diseases face when looking for treatment?
- What role does medical research play in the treatment of rare diseases?
- Do you encourage members of your community to participate in medical research? Why or why not?
- How can we translate trust between a researcher and an organization into trust between a researcher and a community?
- What is your advice for someone considering participating in medical research?
