Message from the Immediate-past President

Yves Juillet“DIA has enthusiastically embraced patients and patient advocates as stakeholders, which is the aim of our Patient Fellowship programme introduced eight years ago at the EuroMeeting. But their presence at these meetings is only the first step. They have already started to follow up attending by actively participating as session speakers and chairs, and as members of our planning committees for these programmes. The DIA Board of Directors, and Regional Advisory Councils for Europe and North America, now include patient representatives and we look forward to this trend advancing into our other regions.” 

Yves Juillet, DIA Immediate-past President and Founder of the Europe Patient Fellowship Programme

Patient Fellowships

What was on offer for Patient Representatives at the 2013 EuroMeeting in Amsterdam?

Patient Networking Lunch
A lunch held at the beginning of the meeting that allowed patients to meet each other and senior DIA staff. 

Programme Highlights

Public Private Partnership for Biomedical Research under Horizon 2020: Patients Perspective on Scientific Priorities.
Perspectives and Collaboration between patients and students.

The European Patients Academy on Therapeutic Innovation – An unprecedented public private partnership to empower patients to engage as real partners in the drug development process.

Patient Booth 
Placed in the exhibition area and served as a meeting point. The informal nature of the booth allowed patients to get in touch with each other and share information. Patient organisations brought flyers, pictures and posters to decorate the booth and share with other participants.

Patient Booth

Connection Reception
Patient representatives took advantage of this excellent opportunity to connect with the EuroMeeting 2013 stakeholder group that included industry sponsors, regulators, etc.
Poster Area hosted posters of patients, students and professional abstracts.

Patient Feedback Lunch
Gave patient representatives the opportunity to give feedback to key DIA staff on their EuroMeeting experience. Many of the recommendations will be used to enhance the 2014 EuroMeeting in Vienna.

2013 EuroMeeting Patient Associations

AICCA Italian GUCH Association
Alkaptonuria Society (AKU)
Alstrom Syndrome
Alternating Hemiplegia of Childhood Association of Iceland (ACH)
ASHOKA Innovators for the Public
Associatia Copilul Meu-Inima Mea
Association Ectodermal Dysplasia
Association of those affected by Ovarian Cancer (ASACO)
Behcets Syndrome Society
Debra Bulgaria
Dutch Adrenal Society
European Federation of Allergy and Airways Diseases, Patients Associations
European Liver Patients' Association (ELPA)
European Multiple Sclerosis Platform
European Patients' Forum
Federation of Patients with Rare Diseases from Central and Eastern Europe & Russia
Foundation for Children with Spinal Muscular Atrophy
French Rett Syndrome
Greek Alliance of Rare Diseases
Hungarian Rett Syndrome
International Alliance of Patient Organisations (IAPO)
Malta Health Network
Myeloma UK
Netherlands Haemophilia Society
Netherlands Interstitial Cystitis Patients Organisation (ICP)
NVLE Patient organisation for lupus, scleroderma and mixed connective tissue disease (MCTD)
Parkinson Vereniging (Dutch Parkinson's disease Association)
Prader Willi Syndrome Hellas
Rare Diseases of Finland
Fabry International Network
Rett Syndrome Europe
RP Fighting Blindess
Romania Thalassaemia Association
Sarcoma Patients EuroNet e. V. (SPAEN)
SLE-LED -Lupus Network
Society for Mucopolysaccharide Diseases
Spanish Patients Association
Wilhelm Foundation Ds
World Federation for Incontinent Patients (WFIP)

What Past Participants Have Said...

"Thanks to DIA Europe for giving me the opportunity to attend this very prestigious conference. I learned a lot from the sessions. I look forward to collaborating further with DIA." 

"It was a great programme and was a wonderful opportunity to meet other patient representatives and discuss common issues of interest.” 

"I haven’t experienced anything like this programme anywhere else in the world. Sure, patient representatives are invited to conferences but this is something very different and very unique.” 

"I learned that it is very useful especially for patients in isolated regions to have an outline platform for discussion and exchange." 

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