“This was truly the first patient-centric meeting I’ve ever attended, and that was very much thanks to Philipp’s vision…The CDKL5 Research & Family conference, which Philipp was instrumental with in shaping the agenda, was an exceptionally great meeting! I had a chance to talk to many of the families and I know they appreciated these days and loved how much opportunity they had to participate, tell their stories, and help shape the field and advance it. This was truly the first patient-centric meeting I’ve ever attended, and that was very much thanks to Philipp’s vision.”

Undisclosed pharma participant at the same conference: “You and Carol-Anne organized the best disease-focused family meeting I ever attended.  The interaction and co-collaboration amongst all constituents were extremely beneficial to everyone in attendance.  I especially appreciated hearing directly from the caregivers about their needs and wants for clinical trials and new medications.”

Ana Mingorance
Chief Development Officer LouLou Foundation, London, UK
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