Sabine Wagner, Vorstandsmitglied und Regionalgruppenleiterin Netzwerk Neuroendokrine Tumore (NeT) e.V.
Ihnen Allen herzlichen Dank für die tolle Ausarbeitung des Projektes und den ausführlichen Austausch. Ich bin noch immer beeindruckt, dass nach dem anfänglich langen Fragebogen, den wir gemeinsam immer und immer wieder ausgearbeitet haben, ein so tolles Endergebnis entstanden ist und dass dies nur möglich war, weil viele Betroffene die Möglichkeit hatten, sich aktiv an der Umfrage/ Diskussion zu beteiligen.
read more
Emma Margarete Reil, Vorsitzende des Sklerodermie e.V.
Der Sklerodermie e.V. in Verbindung mit den Sklerodermie-Experten des DNSS (Deutsches Netzwerk systemische Sklerodermie) bat admedicum um Unterstützung bei der Druchführung einer Umfrage bei über 1200 Sklerodermie-Patienten in Deutschland. Zu untersuchen war, inwiefern Sklerodermie-Patienten von der zwar empfohlenen, jedoch derzeit nicht re-finanzierten und daher schwer erhältlichen, Infusionstherapie profitieren.
read more
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.
read more
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.“
read more
Dr. Dipl. Ing. Horst Mehl, Ehrenvorsitzender und langjähriger Vorsitzender des Mukoviszidose e.V.
Herrn Dr. Andreas Reimann lernte ich in den Jahren 2002 - 2012, als Geschäftsführer unseres Verbandes, über die Maßen schätzen. Ich bin Vater eines Sohnes mit Mukoviszidose und weiß, was alle Betroffenen an Zuwachs von Lebenszeit und Lebensqualität ihm verdanken. Herrn Dr. Reimann ist es bei seiner Tätigkeit gelungen, Menschlichkeit und professionelles Handeln, zum Wohle der Kranken, zu verbinden.
weiterlesen
Steffen Stürzebecher, SVP Head of Innovation Unit Specialty Therapeutics, Grünenthal
His passion for patients' needs and real innovation is as admirable as is his sharp intellect and his understanding of the science, providing for a blend of capabilities and attitude that make "business" equally enjoyable for colleagues and business partners. One always feels his determination to succeed, paired with the patience that our business needs, the preparedness and energy to deal with foreseeable and non-foreseeable hurdles keeping the motivation high at all times as a contributor to a project and as a leader.
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.
read more
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. I fully appreciate how crucial the needs for patient organizations and the mediation required by people like Philipp, highly capable of collaborating, organizing, and following through, all essential to ensure the patient voice is heard, understood, and brought directly to the industry.
read more
Dr Jenny Royle, Senior patient-centricity programme leader of Cancer Research UK, on panel facilitator Rachel Jone
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 peoples non-verbal as well as verbal meanings very quickly.
read more
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 ...
read more
