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
 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases