The Voice of Rare Disease
Patients in Europe
First Spanish edition of EURORDIS Summer School
The 2017 ExPRESS Expert Patient and Researcher EURORDIS Summer School took place in early June Barcelona and brought together a record number of trainees from around the world. It was organised with new collaborations and in parallel to a first-ever Spanish version, creating a truly international dimension to this year’s programme.
The 2017 Trainees
The Summer School continues to receive a higher number of applications every year. In 2017, the review committee selected trainees from a record 110+ applicants. In total, over 60 students from 25 countries, including Canada, South Africa, Malaysia and India, as well as many European countries, were selected to take part in the English version of the Summer School. They represented a wide range of rare diseases including neuromuscular, metabolic and neurofibromatosis diseases. Since 2015, the Summer School now also welcomes researchers as participants, as well as expert patients.
One participant commented, "This is a great opportunity to learn about where and how patient representatives can have a voice to be well prepared and empowered to defend our patients".
See #EURORDISSummerSchool to get a snapshot of the action live from Barcelona.
EURORDIS Summer School Edición Española
Strong interest from Spanish-speaking patient representatives led to the organisation of a Spanish version of the Summer School, held in parallel to the English-language version. It welcomed 43 participants from many regions of Spain as well as Central and South America.
New and consolidated partnerships in 2017
As well as welcoming patient advocates from new disease areas and new regions of the globe, the 2017 Summer School also brought new partnerships and consolidated EURORDIS’ relations with existing organisations. EURORDIS was very pleased to partner with Rare Diseases International, the Canadian Institutes for Health Research and the University of Leiden Medical Centre. Other organisations that have supported the Summer School for many years were also present including representatives from the European Medicines Agency, the European Clinical Research Infrastructure Network and the AFM-Téléthon.
Why a EURORDIS Summer School?
Patients take an ever-increasing role in advocating for medicines development, equal access to treatments and clear, accurate and comprehensible medical information. In order to help prepare for this role, and as part of a commitment to empower people living with a rare disease, EURORDIS launched its own Training Programme for expert patients in 2008. There are over 400 EURORDIS Summer School alumni to date. One of the programme’s main aims is to help patients and researchers gain an understanding of the regulatory process of orphan medicinal products so that they are able to advocate at a European level.
Take part in online training
You can get involved in EURORDIS’ training on medicines development for free and at a place and time that suits you.
Ahead of the annual week of training in Barcelona, participants are invited to take part in a pre-training module online that is divided into 7 units. Patient representatives who do not attend the Summer School in Barcelona are also invited to take part in this pre-training module for free. If you would like to complete this module and receive certificates for your participation, please request unit quizzes by emailing email@example.com.
The EURORDIS Summer School is part of the wider EURORDIS Training Programme, which also includes free online training modules on medical research, ethics, the regulatory framework, the European Medicines Agency, benefit-risk assessment & pharmacovigilance and market access. These can be completed wherever and whenever suits you.
Apply for the 2018 EURORDIS Summer School
The next edition of the Summer School will take place in June 2018 in Barcelona. The application process will open in September 2017. Information on how to apply will be posted here in the coming months. For more information on the EURORDIS Summer School please contact firstname.lastname@example.org.
Eva Bearryman, Communications Manager, EURORDIS