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  • 21May

    Share4Rare toolkit for rare advocacy

    This practical toolkit shares best practices and tools that advocates have used to support innovation and offers practical advice on how to make a difference for rare disease patients. Patient advocates give a voice to a spectrum of healthcare stakeholders, which include patients, survivors of illness and caregivers. An advocate can be shaped as an…

  • 13Dec

    The patient advocates will see you now: Model for interacting with industry

    This article featured in Cancer World, explores how Ananda Plate, Chief Executive of Myeloma Patients Europe, makes the case for changing the way patients interact with industry in favour of a model developed by the HIV/AIDS community. The traditional pharma advisory boards she refers to are meetings convened by companies, typically at the instigation of marketing departments,…

  • 5Jul

    Blog: Advocate me

    You probably know a powerful patient advocate. The sort of person who seems to have boundless energy, expert knowledge, and an ability to tell it like it is. But what happens when experts by experience have their own moments of vulnerability? In the summer edition of the Patient Experience quarterly magazine, Sue Robins talks of her…

  • 19Apr

    If you want to truly put patients at the centre, appoint a Patient Director

    David Gilbert, Patient Director at Sussex MSK Partnership, has written an open letter to healthcare organisations about employing patient directors to “ensure that there is a culture and systems that embed ‘patient partnerships’ in everyday business”. https://futurepatientblog.com/2017/03/23/whats-stopping-you-appointing-a-patient-director-an-open-letter-to-all-healthcare-organisations/    

  • 28Jan

    New toolbox helps patients understand more about medicines development

    The European Patients’ Academy has launched an online Toolbox on Medicines Research & Development. The toolbox is available to European patient groups, patient advocates and anyone who is interested in learning more about the medicines research and development (R&D) process. It aims to support users can acquire the knowledge to make a meaningful contribution to…

  • 13Mar

    Training for patients on skills to influence medicines research and development

    Typically, research on medicines has been guided by what doctors and scientists think is important, while the voice of those affected by chronic or acute conditions is not heard loudly enough. The Europe-wide project, European Patients Academy on Therapeutic Innovation – EUPATI, is seeking to change that by helping patient advocates and experts gain the…

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