PCWP: The beginnings

The PCWP was established in 2005 in order to provide recommendations to the European Medicines Agency (EMA) and its human scientific committees on all matters of interest to patients and consumers in relation to medicines.

In January 2006 the PCWP originally consisted of 10 consumer and patient organisations. Over the years this number has grown to 15 and currently is composed of the following:

  • European AIDS Treatment Group (EATG)
  • European Cancer Patient Coalition (ECPC)
  • European Federation of Allergy and Airways Diseases Patients' Associations
    (EFA)
  • European Federation of Neurological Associations (EFNA)
  • European Heart Network (EHN)
  • European Multiple Sclerosis Platform (EMSP)
  • European Older People's Platform (AGE)
  • European Organisation for Rare Diseases (EURORDIS)
  • European Patients' Forum (EPF)
  • European Public Health Alliance (EPHA)
  • Health Action International Europe (HAI)
  • International Alliance of Patients' Organizations (IAPO)
  • International Diabetes Federation (IDF)
  • International Patient Organisation for Primary Immunodeficiencies
    (IPOPI)
  • The European Consumers' Organisation (BEUC)

 

Lise Murphy-PCWPLise Murphy is a Eurordis nominated Patient Representative

Current mandate: February 2007 – 2010

Swedish Marfan Syndrome

 

 

 

 

 

 

 

 

 

 

 

 

François HouÿezFrançois Houÿez is a Eurordis nominated Patient Representative

Current mandate: February 2007 – 2010

 

 

 

 

 

 

 

 

The EMA Human Scientific Committees Working Party with Patients and Consumers Organisations (PCWP) was established to provide recommendations to the EMA and its Human Scientific Committees on all matters of direct or indirect interest to patients in relation to medicinal products including, but not limited to the tasks defined below:

 

  • Contribute to the implementation Final Recommendations and Proposals for Action of the former EMA/CHMP Working Group with Patients Organisations (Doc.  Ref. EMEA/161660/2005).
  • Contribute to the provision of information adapted to patients and consumers needs.
  • Contribute to the development of appropriate communication tools.
  • Contribute to increase awareness of patients in relation to the use of medicines.
  • Contribute to promote a rational use of medicines.
  • Contribute to the development and the training of a network of Patients’ and Consumers’ Organisations.
  • Define performance indicators for monitoring of implementation of actions.
  • Provide general advice in relation to product specific matters, at the request of the EMA Human Scientific Committees.
  • Liaise with interested parties (health-care professionals’ organisations, learned societies, academia, pharmaceutical industry) (See section VI. Rules of procedure point 9).
  • Set up drafting groups, when necessary (see section VI. Rules of Procedure, point 4).
  • Liaise with other Working Parties on matters of interest to patients in relation to medicinal products.
  • Provide advice to the CMD (h) upon request, on matters of interest to patients in relation to medicinal products.

 

Page created: 02/02/2010
Page last updated: 19/04/2012
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases