Melanie Isele

Institution(s): DEBRA Austria

Function: Patient Representative

What are your own areas of work, and what insights do these give you on EB? 

Since my daughter was diagnosed with EB, my primary focus has been on supporting her and our family as we navigate the challenges of this condition. Understanding EB, connecting with other EB families, and fostering a supportive community have become my passion.

My background in Molecular Biology and Business Administration provides a unique perspective. The former gives me insight into the complexities of EB research, while the latter helps me understand the business side of drug development for rare diseases. DEBRA Austria has enabled me to leverage this knowledge and my personal experience as an EB mother in a professional capacity.

As a patient representative, I advocate for the needs of individuals affected by EB and work closely with researchers to identify promising solutions.