RareLab
Blending research with novel solutions to created needed positive change.
The Need
Innovation in rare diseases can stall due to the high risk associated with new ideas. Many promising concepts are abandoned in favor of established, yet potentially ineffective, approaches.
RareLab provides a safe space to experiment and de-risk innovation. By validating concepts before significant investment, we accelerate the development of impactful solutions. Our platform supports both internally originated and externally sourced projects.
We partner with innovators to pilot their ideas, providing expertise, resources, and a structured environment to test their viability.
Our team of experienced professionals, including subject matter experts and individuals with lived experience, drives these initiatives. Through our pilot programs, we identify promising concepts that can be scaled into standalone organizations or integrated into existing programs or organizations.
Current RareLab Pilot Programs
Click on the link below to learn more about each of our RareLab Pilot Programs.
RareLab Collaborative Research and Reports
Learn more about novel projects we have partners on to advance our collective understanding, fill existing gaps and resources, and identify recommendations for future improvement in rare disease.
Health Equity in the Hemophilia B Community: Perspectives of Patients’ Report Findings
Collaboration between Coalition for Hemophilia B and RareRising
Health Equity in the Hemophilia B Community: Perspectives of Patients’ Report Findings – Spanish
Collaboration between Coalition for Hemophilia B and RareRising
A Report of Survey Findings: Diversity, Equity and Inclusion in Rare Disease Organizations
Collaboration between the Rare Disease Diversity Coalition and RareRising (formerly Upequity)
The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses
Produced by the National Alliance for Caregivers
*RareRising Board Member Mousumi Bose, PhD and CEO Kimberly Haugstad, MBA, and Theresa Smith, LPN authored the guidebook
