Karen Keeley | Consultant
R.A.R.E. Science

Karen Keeley, Consultant, R.A.R.E. Science

Designed, implemented a data collection procedure and responsible for working with several Rare Patient Advocacy groups/non-profits/patients and Medical Institutions in the USA and Internationally to capture, aggregate and store all patient Institutional Medical Health Data. 
Compiled an International Medical Institution Data set for sites with RARE disease specialties 
As a patient coordinator and advocate she enjoys helping patients understand the collection and research process that could make a significant difference in their or their child’s life and medical care. That is what it is all about, connecting patients with opportunities that may improve their health outcomes.
RARE Science is a non-profit research organization focused on accelerating identification of more immediate therapeutic solutions for kids with rare disease potentially through re purposing currently approved drugs.
Navigating the health care system in rare diseases- more and more foundations are coming to us to utilize our resources.
RARE Science accelerates finding therapies for kids with rare and undiagnosed disease by empowering patient families/foundations with tools that help with community awareness and patient outreach through our RARE Bear Program. We also drive research by pooling knowledge and providing research tools for specific diseases so we can understand the biology that is responsible for the observable traits of rare disease. This helps identify therapies that may help in the more immediate future. We unite patient families, clinicians and researchers across the globe to accelerate finding cures for the most vulnerable patients, our children!
Our RARE Bear Program plays an instrumental role in patient family support. In addition, the RARE Bears help us with patient outreach, education and awareness to improve early diagnosis and support our research programs to help accelerate finding cures for kids with rare disease.


Pharma Pricing & Market Access USA Day 1 @ 16:10

PANEL: The impact of precision medicine and biomarkers on drug pricing structures

  • Understanding how biomarkers will have an increasing role to play in drug pricing 
  • What impact will precision medicine have on the overall cost of healthcare
  • Do we have the necessary evidence to put a price on precision medicine?

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