Patients and carers

  • Email
  • Help

Information for you

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

  • 10 year anniversary of PCWP

    2016 marks the 10th anniversary of EMA's Patients' and Consumers' Working Party (PCWP). The PCWP is a unique platform for exchange and dialogue with patients and consumers on all issues related to medicines. To mark the occasion, EMA held an anniversary meeting, of which a video recording is available on the meeting page.

  • Patients_consumers_annual_report

    Annual report on EMA patient and healthcare professional interactions

    EMA has published its 2015 annual report on its interactions with patients, consumers, healthcare professionals and their organisations. The report demonstrates the Agency’s continued commitment to incorporating these stakeholders' views into the regulatory aspect of medicines development.

  • Research on patient preferences

    EMA, Myeloma UK and the University Medical Centre Groningen have completed the first stage of a survey with myeloma patients with the aim of understanding their perspectives on the benefits and risks of treatments and evaluating how to capture individual preferences for consideration in regulatory decision making. The research project follows a pilot study EMA conducted in 2015. Findings will be pulished later in 2016.

  • EMA and FDA collaboration on patient engagement

    EMA and the United States Food and Drug Administration (FDA) have set up a new ‘cluster’ on patient engagement. This will provide a forum to share experiences and best practices on the way the two agencies involve patients in development, evaluation and post-authorisation activities related to medicines.

News for patients and carers

Events of interest

  • 11/11/2016

    EMA

    Spinal muscular atrophy workshop

    The European Medicines Agency (EMA), SMA Europe and TREAT NMD are co-organising a one-day workshop on spinal muscular atrophy (SMA) on 11th November this year. The workshop will bring together key stakeholders to discuss, help and advance the development of therapies for the treatment of SMA. Topics for discussion will include an overview of the disease, the pharmacology of the molecules under investigation, natural history data, clinical outcome measures and biomarkers. ... Read more

  • 19/09/2016

    EMA

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

    This joint PCWP/HCPWP workshop on social media is being held to discuss the challenges and practical applications of social media and their impact on regulators, healthcare professionals and patients. The objectives are to provide an overview of what social media are and what they are being used for in the context of medicines regulation; share healthcare professionals’, patients’ and regulators’ practices on how social media is used to amplify communication on medicines information and regulatory outputs; discuss how social media is being used for gathering medicine-related data; reflect on how communication and data gathering through social media may influence behaviours and attitudes towards medicines information and medicines use, impact regulatory decisions, and shape interactions with stakeholders; and to identify areas requiring action from regulators, patients and healthcare professionals. ... Read more

  • 20/09/2016

    EMA

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

    This joint PCWP/HCPWP meeting will include the election of the PCWP and HCPWP co-chairs for the 2016 – 2019 mandate. Personalised medicines will be discussed and participants will be updated on the PCWP/HCPWP topic groups; the 2017 work programme; the framework of collaboration with academia; and feedback will be given from the scientific committees. ... Read more

  • 14/06/2016

    EMA

    10th anniversary of European Medicines Agency’s Patients' and Consumers' Working Party (PCWP)

    2016 marks the 10th anniversary of the European Medicines Agency’s (EMA) PCWP. A working group of patients' organisations was first created in 2003. Following endorsement of its framework of interaction by EMA’s Management Board, the working group was formalised into an official working party, the PCWP. Building on the importance of multi-stakeholder dialogue, the PCWP regularly holds its annual meetings jointly with the Healthcare Professionals’ Working Party. The PCWP is a unique platform for exchange and dialogue with patients and consumers on all issues related to medicines. The EMA is proud of the work of the PCWP and this anniversary meeting will be an opportunity to reflect on past successes and to plan for the future. ... Read more

  • 10/10/2016 - 11/10/2016

    EMA

    Joint DIA/EFGCP/EMA better medicines for children conference 2016 on optimisiation of drug development for the benefit of children

    The conference will discuss how drug development can be further optimised to the benefit of children’s health. This will include a discussion on lessons learned during the years of full operation of the European Union (EU) Paediatric Regulation, new concepts and strategies for an integrated approach at each and every step of paediatric development and sessions dedicated to specific areas of expertise such as neonatology as well as evolving concepts such as the approach to extrapolation from adult data. On day one participants will discuss more specialised and hot topic issues in five breakout sessions. Day two will discuss the holistic integrated approach and global issues. This event is organised by European Forum for Good Clinical Practice (EFGCP), with the partnership of Drug Information Association (DIA) and European Medicines Agency (EMA). ... Read more

  • See all Events of interest

Information for:

Find information for...

Medicines for elderly

ADR website spotlight

FAQ spotlight