EFGCP - EGAN Patients’ Roadmap to Treatment Working Party

Why the joint EFGCP/EGAN Working Party? 

The European Forum for Good Clinical Practice (EFGCP) and The European Genetic Alliances’ Network (EGAN) have created a common Working Party aiming to drive all elements in the clinical drug development process involving patients’ interests. 


To strengthen patients’ possibilities to impact access to efficient and safe new treatments. 


To support patient organisations’ contribution to the European aim of faster development of efficient and safe new treatments by providing information, know-how, skills and funding for patients and patient organizations  

on clinical trials organization, risks and benefits 

on areas of opportunities for patients’ influence on the clinical development process 

on optimization of communication between patients, physicians, pharmaceutical industry and regulatory authorities on treatments’ benefits and risks 


What are the Working Party activities? 

Development of strategies and action plans to support the “Innovative Medicines Initiative” and other organisations’ initiatives to improve the efficiency of drug development  

Information to patients on clinical trials to improve patients’ participation in clinical trials 

Organisation of workshops and seminars on relevant topics 

Support to EFGCP and EPPOSI workshops and conferences with topics, speakers and programme chairs. 

Preparation of grant application to the 7th Research Framework Programme: TITLE and execution of the programme in case the grant would we provided  

Preparation of books, handbooks, articles and brochures in collaboration with different support partners like:  

“It is my life” 

“Report on EFGCP/EGAN Workshop at the EFGCP Annual Conference 2006” 

“Patients as partners in the drug development process” 

“Book on Biobanking” 


How is the Working Party organised? 

Two Co-Chairs, one from EGAN and one from EFGCP, are chairing the Working Party consisting of representatives from interested organisations like different patient organisations, industry associations, pharmaceutical companies, physician organisations, academic institutions, health authorities, ethics committees, etc.  

In face-to-face meetings, tele-conferences and per e-mail the different projects are discussed, designed and planned, priorities are set, roles and responsibilities distributed, the execution supervised and the final “product” discussed, agreed and disseminated. The representatives take the responsibility to discuss and comment the Working Party’s activities and products internally in their organisation.  


Documents & Latest publications

Presentation Brochure of the EGAN-EFGCP Working Party on Patients’ Roadmap to Treatment


Flyer – It’s MY life – A new revolution patient power by Simon Rozendaal


EGAN Glossary of Terms


EGAN FAQ on Clinical Trials


EURORDIS Charter for Clinical Trials in Rare Diseases, by Gábor Pogány, Eurordis, Hungary




Contact the Chairpersons
Prof. Jean-Jacques Cassiman & Mr. Cees Smit
EFGCP Secretariat
Square de Meeûs
Rue de l'Industrie 4
B-1000 Brussels
Tel +32 2 732 87 83
E-mail: jean-jacques.cassiman@efgcp.eu / cees.smit@efgcp.eu

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