The DIA 2010 EuroMeeting Fellowship Programme

22ND ANNUAL DIA EuroMeeting
March 8 -10, 2010, Monaco

5th DIA PATIENT FELLOWSHIP PROGRAMME

Patients and their representatives are seen as equal partners:

The DIA Patient Fellowship programme celebrated its 5th anniversary at the 22nd Annual DIA EuroMeeting which took place in Monaco on March 8th through 10th, 2010. This programme has been assessed by the patients and other healthcare stakeholders as a real success in enabling and fostering the participation of patients’ representatives in the annual DIA EuroMeetings.

The DIA patient fellowship programme was initiated by Yann Le Cam, CEO of EURORDIS, and Dr. Yves Juillet, Senior Advisor to the LEEM (French Pharmaceutical Industry Association) and DIA Board member. It provides 47 fellowships to European patient advocates across diseases to speak in sessions or attend the EuroMeeting. These patient advocates must belong to a patient association in order to be eligible and are selected based on their level of English and experience in drug development, clinical trials and/or advocacy.

Participating in the EuroMeeting represents a great opportunity for patient advocates to increase their knowledge on latest drug development issues and regulatory affairs, as well as to network with high-level healthcare stakeholders from pharmaceutical industry, biotech, academia and representatives from the European Medicines Agency (EMA) and national competent authorities.

The EuroMeeting attracts well over 3,000 participants as well as exhibitors mainly from Contract Research Organisations (CROs). During this three-day conference, sessions are organised around 13 themes covering issues such as innovation, e-health, personalised medicines, clinical trials and biotech-derived medicines.

This year, a special theme led by Dr. Mary Baker was dedicated to the “Informed patients”. There were altogether 14 patient speakers in the various sessions.

Read how Greetje Goossens, DIA patient fellow, experienced the EuroMeeting. 

Read as well the short summaries of some sessions written by the DIA patient fellows - who are our “congress report team” - and which are relevant to the patients’ representatives.

After five years, the goal of the DIA patient fellowship programme has been reached thanks to the patients’ advocates as well as to those who believed in its success from the very beginning.

The patient fellows who attended the EuroMeeting last March in Monaco unanimously and happily noticed that healthcare professionals find the presence of patients and their representatives interesting and valuable. A real exchange and dialogue can take place with the patients who are increasingly recognised as experts and equal partners.

The patient fellowship programme is fully integrated in the EuroMeeting thanks to the dedicated team of the DIA Europe branch: Dr. Brigitte Franke-Bray, CEO, and her colleagues, Ms Maureen McGahan and Mr. Dermot Ryan.

The President of the DIA, Dr. Jeffrey Sherman, is very supportive of this patient fellowship programme.

The Patient fellows were under the spotlight in Monaco

At the Patient Fellowship Welcome Reception, Dr. Jeffrey Sherman made a speech renewing the DIA’s support and emphasising that we all have been or could be patients at some point.

During the plenary session, Dr. Brigitte Franke-Bray highlighted the 5th anniversary of the DIA patient fellowship programme and made a kind tribute to Mr Yann Le Cam and his assistant, Ms Ariane Weinman, for their involvement and invaluable contribution to this programme.

The patient fellows were invited to the DIA VIP Reception on the second day of the EuroMeeting. They were able to network and discuss with DIA Board members, the two co-chairs of the EuroMeeting 2010 and the theme leaders, EMA’s representatives, regulatory affairs’ and pharmaceutical industry’s representatives.

Dr. Jeffrey Sherman was present as well as Dr. Paul Pomerantz, Worldwide Executive Director, Dr. Richard Day, President Elect, and Dr. Yves Juillet.

Dr. Pomerantz and Dr. Day are also very interested in promoting the participation of patients’ representatives.

On the last day of the EuroMeeting, Dr. Day kindly attended the patient fellows breakfast meeting and listened to the various comments made by the patients. The fellows applauded the work performed by the DIA, the quality of the tutorials and the presentations in the sessions, and the overall organisation. Some suggestions and ideas were proposed on how to improve the programme for next year.

A dedicated booth for the patients in the Exhibition Hall:

For the third consecutive year, the DIA provided the patient fellows with a booth entitled: “DIA Patient Fellowship”.

Amongst the 176 exhibitors, the Patient Fellowship booth greatly increased the visibility of the participation of patients and their representatives. Other exhibitors included Contract Research Organisations (CROs), consulting companies and regulators such as the European Medicines Agency.

The booth was very well located; at the entrance of the Exhibition Hall. The names of the patient associations represented in this year’s DIA EuroMeeting were all displayed.

This space was used as a meeting place and the various patient fellows brought brochures from their associations.

Many EuroMeeting participants stopped by the booth, first a bit surprised and wondering about this programme. After discussion with the various patient fellows manning the booth, they were happy to know that patients’ representatives are integrated in the programme.

We are now looking forward to the DIA EuroMeeting 2011 in Geneva!
For further information on the DIA, please visit their website: www.diahome.org

Special DIA Award to Dr. Yves Juillet:

Dr. Yves Juillet received the “Founders Service Award” during the March meeting in Monaco. He has been involved with the DIA since 1990. He chaired several themes in DIA Annual Meetings and EuroMeetings. He was a member of the DIA Board of Directors from 2002 to 2008 and is a member of the DIA Advisory Council Europe (ACE).

EURORDIS congratulates Dr. Juillet for his outstanding career and his visionary management.

List of patient organisations represented at the DIA EuroMeeting 2010:

• AESCDG, Spain
• Agrenska, Sweden
• Alliance SANFILIPPO, France
• Apai - Associazione Patologie Autoimmuni Internazionale, Italy
• Associazione Veneta per la lotta contro la Talassemia, Italy
• Behçets Syndrome Society, UK
• Club 13&Co, National Association of Persons with mental disorders and their Friends, Lithuania
• DEBRA Croatia
• European AIDS Treatment Group (EATG)
• European Cancer Patient Coalition
• European Federation of Neurological Associations (EFNA)
• European Myeloma Platform
• European Patients' Forum
• EURORDIS
• Federation of Polish Patients, Poland
• Genetic Interest Group, UK
• Greek Alliance for Rare Diseases, Greece
• Hungarian Rett Syndrome Foundation, Hungary
• IAPO, UK
• International Brain Tumour Alliance, UK
• Interstitiële cystitis Patientenvereniging, ICP, The Netherlands
• Ligue Française contre les Maladies Rhumatismales, France
• MPS Society, UK
• Myeloma Euronet, Germany
• National Alliance of People with Rare Diseases, Bulgaria
• Patient Knows Best, UK
• Rare Diseases Sweden
• Rett Syndrome Europe
• Spanish Patients Forum, Spain
• Thalassaemia Society, UK
• Tuberous Sclerosis Complex, Canada

Author: Maria Mavris and Ariane Weinmann
Photos: © EURORDIS