Emma Margarete Reil, Chariman of Sklerodermie e.V.
The Sklerodermie e.V. in connection with the scleroderma experts of the DNSS (German Network for Systemic Scleroderma) asked admedicum for support in conducting a survey among more than 1200 scleroderma patients in Germany. The aim was to investigate the extent to which scleroderma patients benefit from the infusion therapy, which is recommended but currently not reimbursed and therefore difficult to obtain.
Lupin Pharmaceuticals, Zug, CH
By systematically involving 390 myotonia patients across 18 European countries through the project MYOPATH, admedicum® was instrumental in demonstrating EMA the great need for patient access to Namuscla® (mexiletine). The EMA Committee of Orphan Medicinal Products (COMP) explicitly highlighted the quality of the MYOPATH survey methodology that led to the capture of important information regarding a lack of treatment access resulting in patient harm.
Ana Mingorance, Chief Development Officer LouLou Foundation, London, UK
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 and 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 on 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 was extremely beneficial to everyone in attendance. I especially appreciated hearing directly from the caregivers their needs and wants for clinical trials and new medications.“
Steffen Stürzebecher, SVP Head of Innovation Unit Specialty Therapeutics, Grünenthal
His vision of a patient centric approach to pharmaceutical development, in particular in rare and orphan diseases, together with the implementation of a concrete series of patient focused events has created a momentum that our company is still benefitting from.
Horst Mehl, past-president and currently honorary president of Mukoviszidose e.V., the German Cystic Fibrosis Association
During his time as CEO of Mukoviszidose e.V., the German Cystic Fibrosis (CF) Association (2002 – 2014) and Managing Director of our research affiliate, Mukoviszidose Institut GmbH (2006 – 2015), I got to appreciate Andreas Reimann. I am a father of a son living with CF and I am grateful to what Andreas has contributed to the lives of ...
Susan Stephenson , RN BSN CCRN Independent Rare Disease Pain Advocate and Consultant N. Chesterfield, VA USA
Philipp possesses all the many skills needed and essential for bringing together patient organizations and their KOLs into the limelight of industry! For more than 30 years, I have promoted genetic diseases and pain awareness as a health professional with a genetic disease and chronic pain.
Dr Jenny Royle, Senior patient-centricity programme leader of Cancer Research UK, on panel facilitator Rachel Jones
Rachel interacts with patients and their families with both tact and ease, ensuring that we end up with networks of people engaged and wanting to be involved. She has an ability that I think is rare to find: naturally picking up on people's non-verbal as well as verbal meanings very quickly.
Siobhan Southam, Global Communications Lead AstraZeneca
She is differentiated by her skill at delivery and bringing people together to ensure projects always deliver to time and with much good humour along the way! A true people person, she thrives in organisational situations that others might find tricky, embracing change and challenge herself and ensuring that others benefit and grow ...