In September 2025, having approximately 60 experts gather for the First International Symposium of EDDs (Epidermal Differentiation Disorders) to focus exclusively on our rare diseases was a dream come true for those of us – like PC Project – who are working relentlessly to garner attention in the scientific and medical world.
Thanks to Antoni Gostynski, Julia Clabbers, Edel O’Toole, Amy Paller, Juliette Mazereeuw, Eli Sprecher, and Angela Hernandez-Martin for including patient representatives as equal collaborators in the presentations and group discussions.
In Janice Schwartz’s (PC Project’s) portion of a presentation, two facts about painful palmoplantar diseases were included that are indicative of all EDDs:
- Our rare diseases are often not considered serious, even though our patients suffer from terrible daily physical and emotional pain.
- We lack experts who are interested in carving out a portion of their careers to focus on our diseases. (We are changing that!)
Best of all, we were joined by some of the brightest researchers and clinicians in the world in Versailles, and we couldn’t be more grateful for this symposium – the first in a new era that will focus heavily on what our diseases have in common instead of our differences.
It was a pleasure to share this experience with other EDD patient leaders, all dedicated to the patients we love and serve:
- Mandy Aldwin-Easton, ISG (UK)
- Ruth Anton-Morales, ICHTHYP (Global)
- Denise Gass (FIRST, USA)
- Helen Lill, IE Cure Project (Global)
- Karin Veldman (ENI, Ichthyosis Netwerken, NL)
