admedicum® Business for Patients
Emma Margarete Reil,
Chairman, 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 refinanced and therefore difficult to obtain. The questionnaire developed by the Sklerodermie Selbsthilfe e.V. and experts in scleroderma was checked for plausibility by admedicum, supplemented, adapted and prepared in such a way that it reached as many patients as possible in a short time, both on paper and via an online survey. "The company admedicum did not only have large empathy and understood the problems, it dealt also so sovereignly with us, as if we would know each other already for years and let feel that we are all on equal eye level .
The survey showed that a high percentage of patients benefit enormously from the therapy - both medically and in everyday life. "We finally had in our hands what we had known and experienced for years - but never in numbers and never according to different criteria could we question and evaluate.
The DNSS experts were enthusiastic about the results and admedicum's competence and will prepare a scientific analysis on the basis of the survey, which without admedicum could not have been implemented in this way in terms of content, form or substance. This can be an important first step for the approval of the therapy and a cost assumption by the health insurance companies and thus an important step towards an improved care of scleroderma patients.
Many thanks to the team of admedicum
Emma Margarete Reil,
Chairman, Sklerodermie e.V.
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.
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 CF-patients and their beloved ones.
Andreas could combine a human attitude and professionalism to the benefit of the patients. He helped to foster the association to an even higher reputation, both nationally and internationally. He managed to raise awareness in the public and fostered support in health-policy for the objectives of CF-patients. This again helped to bring CF into the focus of research and medical care. Thanks to his prudent financial management and his good relationship with major donors, the association could raise sufficient funds to foster research and therapy and to promote important international projects. Andreas always had an impact on patients and relatives in mind when making research and care a priority of our activities. He also encouraged patient activists in the association and co-operated with pharmaceutical companies on eye-level always keeping in mind that transparency and independence of the patient organisation must never be compromised with.
How much he cared about all people living with rare diseases is underpinned by his volunteer work as vice-president and later on as president of ACHSE, the German umbrella organisation for rare diseases.
If one day we manage to overcome CF, Dr. Reimann has contributed his share. He reminded decision-makers in Germany on their responsibility on the life of patients living with severe chronic diseases
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 shine 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 people's 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”