admedicum® Business for Patients
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.
The COMP concluded that the sponsor’s structured survey (Note: done by admedicum) which used a well-defined methodology together with the review done by COMP members demonstrated that the availability of mexiletine was limited and disrupted in the EU and that resulted in patient harm, particularly in patients with non-dystrophic myotonia. It is therefore established that Namuscla® will bring significant benefit to those affected by the condition.
As a consequence COMP maintained the orphan drug status of Namuscla® which will significantly support patient access across Europe in the years to come. admedicum® thereby helped the Lupin Namuscla® team to create great value both for patients and the company.
Philipp von Gallwitz
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.“
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.
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.
For three years, I witnessed Phillip's commitment to patient organization collaborations. His skills, talents and abilities are exactly what patient organizations need --- and precisely what the industry requires, to help bring new ideas for treatment modalities into fruition.
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. Er hat den Verband zu hohem nationalem und internationalem Ansehen geführt. Das Anliegen, die Öffentlichkeit und mithin die Gesundheitspolitik für Mukoviszidose zu interessieren, wurde perfekt umgesetzt. So rückte Mukoviszidose, sowohl in der Forschung, als auch in der therapeutischen Versorgung der Betroffenen in den Fokus des öffentlichen Interesses. Durch die kluge Finanzpolitik von Herrn Dr. Reimann und sein vertrauensvolles Verhältnis zu Großspendern, konnte der Verband, gerade in den Bereichen Forschung und Therapie, die Mittel erwirtschaften, um unterstützend finanzielle Impulse zu setzen. Dabei dachte Dr. Reimann bei Forschung und Therapie immer vom Patienten her. Die Orientierung am Patienten war oberstes Ziel.
Dr. Reimann gelang es, das Bewußtsein der Selbsthilfe im Verband so zu stärken, daß diesem, aus einem neuen Denken heraus, die unabhängige, transparente Zusammenarbeit mit der Pharmaindustrie ermöglicht wurde.
Wie sehr ihm das Wohl und die Verbesserung der Lebensumstände aller chronisch kranken Menschen am Herzen liegen zeigte sein ehrenamtliches Engagement als Vorsitzender der Arbeitsgemeinschaft Chronisch Kranker (ACHSE).
Wenn es eines Tages gelingt Mukoviszidose zu besiegen, so hat Dr. Reimann ein gut Teil dazu beigetragen. Er hat ein Umdenken der Gesellschaft in der Bundesrepublik und das Bewußtmachen der Verantwortung jedes Einzelnen für chronisch kranke Menschen bewirkt.“
Dr Jenny Royle
Senior patient-centricity programme leader of Cancer Research UK, on panel facilitator Rachel Jones
Rachel always impresses me with the way she has organised and facilitated the focus groups we’ve run together. With topics ranging from science and new technologies, through to patient and healthcare issues, her underlying knowledge, genuine enthusiasm, and natural empathy and understanding of people shines through.
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.
This means that she understands implicitly when (and how) to ask for more information, or when people need a break – the result is a group where everyone (including myself) leaves feeling valued and the information shared is easily translated into knowledge.
Global Communications Lead AstraZeneca
Rachel is an exceptional blend of scientist, business leader and customer-focused individual. During my decade long working relationship with her I am always impressed by her ability to quickly grasp challenges at a conceptual level. 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 as a result of their work with her. Rachel’s passion for patients and indeed all customers shines through and she is always careful to consider internal and external needs across all project deliverables. It has been my pleasure to partner with Rachel within the Medical Affairs department at AstraZeneca”