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Myositis or Idiopathic inflammatory myopathy (IIM) is a group of very rare diseases characterized by inflammation of the skeletal muscles, leading to muscle wasting, weakness and reduced quality of life. Heart and lungs may also be affected and this may lead to a shortened life expectancy. 

Pegasus Berlin 2020 wartet diesmal mit einem ganz besonderen Format auf: Unsere Gast-Moderatoren Paola Kruger, EUPATI Italien, und Roger Legtenberg, CEO Upstrong, werden uns im Stile einer interaktiven Parlamentarischen Debatte zu einer lebhaften Diskussion über Patient Engagement in Forschung und Entwicklung führen! Freuen Sie sich auf einen besonderen Abend!

Krebs ist trotz enormer Fortschritte in der Medizin auch heute noch bei vielen Patienten unheilbar. Forscher entwickeln jedoch vielversprechende Therapien: Ein Pionier im Bereich der Blutkrebsbehandlung ist das deutsche Biotechnologie-Unternehmen Medigene AG. Dessen neuartige Immuntherapie könnte schwer erkrankten Patienten neue Chancen eröffnen.

An indispensable prerequisite for the implementation of patient engagement within the company is to know first of all what patients want. This includes their needs, desires, priorities and preferences. This is increasingly recognized in the pharmaceutical industry. In major publications on collaboration with patients, the European (EFPIA) and many national industry associations as e.g. the German Pharmaceutical Industry Association (BPI) or the Association of the British Pharmaceutical Industry (ABPI) have assigned great importance to this question.

We are delighted to announce Roger Legtenberg as a new independent Expert Partner to our team! Roger, who runs his own consultant firm Upstrong and who is based in the Netherlands, brings significant expertise in regard to clinical development and operations, especially in the rare diseases, and the involvement of patients in the design and recruitment of clinical trials.

Nichts über Patienten ohne Patienten. So arbeitet admedicum. Und so haben wir auch ein neues Video produziert, dass sich mit der Entscheidungssituation von Patienten/innen beschäftigt, die an einer klinischen Studie teilnehmen können.

 

Topics include: Why Patient Engagement, Patient Landscape, Legal and Behavioural Compliance, Contacting Patients and Patient Organisations, Collaboration and Co-Creation, Performance Measurement. You will learn how to initiate and manage collaboration with patients and patient organisations in this e-Learning programme. 

admedicum webinar: Successful industry strategies for implementing Federated European Registries. We explored how the industry can engage with patients to support the formation of strong patient organizations and how that step is important to the creation of federate patient registries. Watch the full recording now.

admedicum in collaboration with the World Alliance of Pituitary Organizations (WAPO), Holland BIO, Santhera Pharmaceuticals, and Lupin Pharmaceuticals is pleased to announce a PEGASUS Networking Event on Tuesday 10 December in Leiden from 17:30 to 19:00. All those interested in patient engagement are welcome to join us for a networking event featuring keynote speeches from patient advocates. 

 

admedicum webinar: Enhancing clinical trial recruitment: successful industry strategies using patient engagement took place on 6 November 2019. We explored how the industry can engage with patients to support clinical trial recruitment rather than just taking the classic method of opening more trial sites. 

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