While many innovations are taking place in rare disease clinical research, there are still challenges to overcome.


In a Genetic Alliance UK blog, Rebecca Starkie, our patient engagement expert explores the innovations and challenges that are present today in rare disease clinical research along with sharing some patient insights. 


Read the Blog

For related resources about rare disease and patient experience see also:

💡 Insight Brief - Making Your Rare Disease Trials More Patient- and Site-Centric

💡 White Paper - Patient and Caregiver Perspectives to Improve Trial Participation

💡 Rare Disease Solutions to Deliver a Better Clinical Experience

About the Author

rebecca starkie

Rebecca Starkie Senior Global Patient Engagement Director, Advanced Clinical

Much of Rebecca’s 26-year career in clinical research has focused on strategy and running clinical studies, with experience in managing studies across a variety of rare disease studies and all phases. Her most recent experience has been specifically around Patient Engagement, supporting biopharmaceutical companies with strategies for recruiting and engaging patients. Passionate about bringing patient engagement to the forefront with an entrepreneurial mindset and liking to think outside of the box, Rebecca holds both a BSc (Hons) Biochemistry and a Certificate in Clinical Research from The University of Leeds, England, U.K.