EURORDIS Open Academy wins ESAE Association ‘Impact Award’ 2023
June 202315 June 2023, Paris – The EURORDIS Open Academy programme has been awarded with the ESAE Association ‘Impact Award’ 2023 for the programme’s achievements in driving positive change. The European Society of Association Executives is the leading organisation in Europe for bringing together association professionals. Each year, they identify and reward projects that inspire the community, with the main goal to learn from best practices and transferable knowledge.
Since 2008, EURORDIS have offered multiple programmes and courses to patient advocates, empowering not only our member organisations and volunteers, but anyone interested in learning more about the rare disease landscape. By the end of 2022, the Open Academy programme had reached over 2650 registered users from more than 155 countries.
Sharon Ashton, Open Academy & Events Director, said
one of the core missions and strategic objectives of EURORDIS is to empower patient advocates and build their capacities to enable them to dialogue with all stakeholders and bring about impactful change for people living with a rare disease at national and European level. We are very pleased to have been recognised for the work we do in empowering patient advocate’s knowledge and skills on important issues impacting the lives of people living with rare diseases.
By fostering their expertise, the Open Academy programme enables advocates to contribute effectively to discussions on healthcare, research, and the development of medicines.
The programme is composed of various schools for EURORIDS members, and e-learning courses open to anyone, freely available on the Open Academy training platform. Upon completion of a course or school, participants become members of the Open Academy alumni, joining a network of over 600 people from over 50 countries.
Marta Campabadal, Open Academy Manager, added
as alumni of the Open Academy, individuals engage as equal partners in various initiatives aimed at enhancing care, treatment, and the overall quality of life for people affected by rare diseases, both at the European and national levels.
The flagship programme of Open Academy is the ‘School on Medicines Research & Development’, which aims to help rare disease patient advocates become experts in medicines research and development. Topics covered in the school includes clinical trials methodology, clinical research, ethics in medicines development, regulatory affairs, health technology assessment and marketing authorisation, delivered by experts in the field. Since 2015, the school has also welcomed researchers to attend.
Marta Campabadal, Open Academy Manager, commented
previous participants of the school have used the skills and knowledge learned to successfully advocate for national healthcare systems to fund rare disease treatment, and contributed to Health Technology Assessment (HTA) on a regional and national level among other activities.
In February 2023, EURORDIS ran its second Rare Disease Week training that empowers patient advocates with knowledge and skills to effectively participate in advocacy activities at the European level to influence the EU decisions that have a direct impact on the lives of people living with a rare disease. In preparation for the week, participants were invited to take an online training course through the Open Academy platform to learn more about the EU institutions and the Ordinary Legislative Procedure of the EU.
EURORDIS welcomes the ESAE Association ‘Impact Award’ 2023, and will continue to strive to deliver high quality courses for patient advocates, on various topics concerning the rare disease community.
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About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 930 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
About rare diseases
The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date affecting an estimated 30 million people in Europe and 300 million worldwide. 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of those genetic rare diseases start in childhood.
Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offerings inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.
Contact
Andrea Osvoll
Communications Manager Projects & Programmes
andrea.osvoll@eurordis.org
+33 1 56535210