Patients and carers

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On this page, you will find information on the Agency’s activities that are most relevant to patients and carers, including news, and events.

You can contribute to the Agency’s work by responding to public consultations.

Learn more about how Patients and carers are actively involved in the work of the Agency.

Featured information

  • Clinical data website survey

    EMA has launched a survey on its clinical data website to collect users’ views on the content and usability of the website. EMA launched the website on 20 October 2016 in line with EMA’s policy on the publication of clinical data (Policy 0070). The survey should take less than 10 minutes to complete and user feedback will contribute to further developing EMA’s transparency policies as well as to improving the website. Start the survey

  • Personalised medicine

    EMA held a workshop in March 2017 on the challenges and opportunities for personalised medicines and the role of patients and healthcare professionals. The workshop discussed policy developments in Europe and globally, the contribution of the European medicines regulatory network and how clinical practice and public participation can support personalised medicine. EMA will publish the presentations, video recording and a workshop report on the event page.

  • Working parties' joint meeting

    A joint meeting between the Healthcare Professionals’ Working Party and the Patients' and Consumers' Working Party in March 2017 discussed interactions between EMA and these stakeholders in 2016, the working parties’ annual work plans for 2018-19 as well as the outcome of the CHMP pilot project on patients’ involvement. It also included presentation on European Antibiotic Awareness Day, and activities on biosimilars at EU level. EMA will publish all presentations on the event page and will also publish an annual report on its interactions with these stakeholders in 2016.

  • Getting involved as an individual expert

    Patient experts contribute their real-life experience of living with their condition directly into scientific regulatory discussions. Primarily, EMA contacts experts via its network of eligible organisations. Individuals interested in working with EMA can also be included in the individual experts' stakeholder database, by completing the online registration form. More information on the database can be found in a question and answer document.

  • Small-population research methods and regulatory application

    EMA held a workshop in March 2017 on three projects funded by the EU, Asterix, IDeAl and InSPiRe, to develop new methodology on design and analysis of small population clinical trials since 2013. The workshop aimed to translate and promote results and novel methodologies into tangible recommendations to advance the clinical research and development of medicines and new treatments for patients with a rare disease and personalised medicine.

News for patients and carers

Events of interest

  • 12/06/2017 - 13/06/2017

    EMA

    EMA/FDA/Health Canada joint workshop addressing unmet needs of children with pulmonary arterial hypertension

    This joint workshop organised the European Medicines Agency (EMA), the United States Food and Drug Administration (FDA) and Health Canada brings together experts and stakeholders to discuss requirements for the development of medicines in paediatric pulmonary arterial hypertension (PAH) and to address the need of the current paediatric clinical practice in a timely manner. The objectives are to improve the understanding of problems related to the conduct of clinical trials in the paediatric population, refine endpoints and study design to address the clinical trials challenges in this rare paediatric population, set priorities in future research in the field of pharmacokinetics and pharmacodynamics measurements and post-marketing tools in paediatric PAH medicines and provide medicine developers with more guidance specific to global product development which takes into account current limitations. ... Read more

  • 19/05/2017

    EMA

    First anniversary of PRIME: experience so far

    The European Medicines Agency (EMA) launched the PRIME (PRIority Medicines) scheme in March 2016. The scheme provides early and enhanced support to medicines that have the potential to address patients’ unmet needs. This meeting is organised by EMA to review the experience gained with PRIME one year after it was launched. The aim of the meeting is to receive feedback from users and potential users of the scheme, provide information on how the rules on eligibility have been applied and what types of support applicants have received so far and discuss practical examples that illustrate the benefits of PRIME and how it builds on the existing tools.  ... Read more

  • 27/06/2017 - 28/06/2017

    EMA

    EMA Human Scientific Committees' Working Parties with Patients’ and Consumers’ Organisations (PCWP) and Healthcare Professionals’ Organisations (HCPWP) joint meeting

    This is a joint meeting with representatives from patients’, consumers’ and healthcare professionals’ organisations. On June 27, EUnetHTA speakers will join the meeting to present on their activities and discuss areas of collaboration with patients and healthcare professionals; on June 28 there will be a presentation on the European Commission’s report on the shortcomings of product information followed by a discussion on the implementation of the report’s recommendations. Also during the two-day meeting, participants will learn about the HMA/EMA Taskforce on availability of authorised medicines and discuss their involvement in the Pharmacovigilance additional monitoring impact analysis; other topics for discussion include a proposal for revision of PCWP/HCPWP mandates and rules of procedure, the principles and practical considerations for streamlining the process for re-assessment of eligibility status, and the drafting process for a joint 2018/19 Work Plan. ... Read more

  • 13/11/2017 - 14/11/2017

    PDCO

    Second paediatric strategy forum on medicine development for mature B cell malignancies in children

    This second multi-stakeholder paediatric strategy forum, jointly organised by ACCELERATE and the European Medicines Agency, will focus on mature B cell malignancies (lymphoma and leukaemia) in children. The goal of this meeting is to share information, in a pre-competitive setting, which will inform a paediatric drug development strategy and subsequent decisions and facilitate the developments of innovative medicines for the treatment of children with B cell malignancies. Participation is restricted and on invitation only. Interested parties, including patients and parent-representatives, academia, clinicians and industry, should express their interest. For clinicians and researchers, priority will be given to those who have expertise and experience in clinical trials for B cell malignancies in children or intend to design such studies in the future. ... Read more

  • 17/05/2017

    Second 2017 meeting of the coordinating group of the European network of paediatric research at the European Medicines Agency (Enpr-EMA)

    The 2017 face to face meeting of Enpr-EMA networks and coordinating group members takes place after the annual open workshop on 16 May. The networks meeting focuses on the outcome of the open workshop and the action plan for 2017/2018. ... Read more

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