2018: A year of patient empowerment

Below, President Terkel Andersen and Chief Executive Officer Yann Le Cam set out how EURORDIS is taking patient empowerment to the next level in 2018.

Patients are experts on their diseases and have a valuable contribution to make to shaping meaningful rare disease research, policies and services.

By providing training, EURORDIS empowers patients and ensures they have the confidence and knowledge needed to bring their expertise to discussions on health care, research and medicines development with policy makers, industry and scientists.

EURORDIS also provides the link between training alumni and organisations such as the European Medicines Agency (EMA), where trained patients actively engage in many activities including scientific advice.

New in 2018! The EURORDIS Open Academy

EURORDIS is excited to announce we are expanding our training programme in 2018 with the introduction of the EURORDIS Open Academy, an initiative bringing together new and exisiting trainings as described below.

The goal of the EURORDIS Open Academy is to build the capacity of rare disease patient advocates at large as well as a select number of researchers and clinicians.

The Open Academy programmes are taught primarily in English through a blend of online and face-to-face trainings, during which patients acquire an understanding of key concepts and terminology, take part in master classes, discuss case studies and benefit from peer-to-peer learning. The programmes aim to enhance the capacity of patient advocates so they can engage concretely in research, policies and services. All Open Academy programmes are also moving towards offering accreditation to participants.
The Academy is characterised as open as all online training modules are also made freely available via the EURORDIS Website to anyone interested in building their capacities independently. As well as patients, each programme is open to a selected number of professionals such as medical and social researchers, clinicians and partners in digital projects. Some programmes are also open to international participants or non-rare disease participants.
To take part in the on-site trainings, candidates proactively respond to a call for applications and successful candidates are selected by an application committee. Participation is co-funded by students and then fellowships are provided by EURORDIS to guarantee equal opportunity.
EURORDIS also nurtures a continued relationship with Open Academy alumni through exchange of information and experiences, peer-to-peer support and regular webinars.

The EURORDIS Open Academy operates independently, ensuring there is no conflict of interest in the programme design, content, faculty or funding mechanisms.

EURORDIS Summer School

Since its launch in 2008, the EURORDIS Summer School has taken plce every year in Barcelona. One week of on-site training is coupled with 7 modules of online training (available free to anyone).The training aims to provide both patients and researchers with the knowledge and skills needed to become experts in medicines research and development.

A Spanish edition of the Summer School also launched in 2017, the second edition of which will take place in 2018.

The call for applications for the 2018 edition of the Summer School is now closed. The application process for the 2019 edition will open in late 2018.

To date more than 400 participants from over 40 countries representing more than 75 diseases have participated. Thanks to connections provided by EURORDIS, alumni members have gone on to become members of committees at the EMA and participate in activities related to the European Network of HTA agencies (EUnetHTA).

In parallel, EURORDIS will continue to collaborate with the European Patients Forum (EPF) on the European Patients’ Academy (EUPATI), which provides complementary trainings and opportunities for peer-to-peer networking with non-rare disease advocates.

EURORDIS Winter School

New in 2018, the EURORDIS Winter School on Scientific Innovation and Translational Research aims to deepen participants understanding of how pre-clinical research translates into real benefits for pateints.

The first edition of the on-site training will take place in March in Paris. The programme will cover topics including the history of genetics, diagnostics and drug repurposing. The online component of the training will be made freely available for anyone to use online.

EURORDIS Digital School

The EURORDIS Digital School will also launch in 2018. Made up of online webinars and two in-person sessions per year, the Digital School provides up to 25 participants (representing rare and non-rare diseases) with training on how to use social media to raise the profile of a patient organisation, as well as practical advice on how to develop an awareness-raising campaign. The first in-person training will take place in autumn 2018.

ePAG Capacity-Building Programme

The European Patient Advocacy Groups (ePAGs) were set up by EURORDIS to ensure the patient voice is present in the development of the European Reference Networks (ERNs).

In 2018, EURORDIS will continue to develop its capacity-building programme for the ePAG representatives with a focus on three levels: (1) ePAG representatives who voice the views of their ePAG’s wider membership to their respective ERN Board, (2) ePAG representatives involved in ERN topic groups and (3) all 200+ ePAG representatives who are involved in the 24 ERNs. For more information please contact lenja.wiehe@eurordis.org.

Wishing you a prosperous and productive year,

Terkel Andersen

President, EURORDIS-Rare Diseases Europe

Yann Le Cam

Chief Executive Officer, EURORDIS-Rare Diseases Europe

If you have any questions about the EURORDIS Open Academy please contact Nancy Hamilton, EURORDIS Training Manager nancy.hamilton@eurordis.org.

Eva Bearryman, Communications Manager, EURORDIS

Page created: 18/01/2018
Page last updated: 18/01/2018