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Nurturing Rare Disease Advocacy: Insights from EURORDIS Open Academy Alumni
In the realm of rare diseases, knowledge and advocacy are paramount. The low prevalence of rare diseases often leads to a lack of awareness among the general public and even within the medical community. Rare diseases often receive less attention in research and development and many still lack approved treatments, leaving families living with rare diseases feeling isolated.
Since its launch in 2008, the EURORDIS Open Academy has been equipping people from across Europe’s rare disease community with the knowledge and advocacy skills to drive positive change in the policy landscape. With over 600 patient advocates trained from 51 countries and over 2,497 e-learning users, the Open Academy is an invaluable resource hub for individuals across the rare disease community. Through comprehensive training programmes, it equips users with the tools and confidence needed to drive positive change in policy, research, and healthcare.
Ruth with Manfred Weber, President of the European People’s Party.
Among its alumni stands Ruth Biller, co-founder and Chair of the German organisation ARVC-Selbsthilfe e.V. and Chair of the European Patient Advocacy Group of ERN GUARD-Heart. After the sudden loss of her daughter in 2011 from arrhythmogenic right ventricular cardiomyopathy and the discovery that many of her loved ones were affected by the same rare disease, Ruth started her journey as a patient advocate.
Ruth initially embarked on the path of patient advocacy with limited knowledge, primarily that of her own family’s situation. But Ruth’s introduction to the Open Academy, with her attendance at the EURORDIS Leadership School in Barcelona in 2019, became a pivotal moment in her evolution as an advocate. Ruth describes the Leadership School as having provided her with essential skills and confidence.
Despite the challenges posed by the COVID-19 pandemic, Ruth continued her educational journey, participating in the Winter School on Scientific Innovation & Translational Research and the Summer School on Medicines Research & Development to deepen her understanding of genetics, translational research, and therapy development.
The training gave me the confidence that my voice will be heard and have empowered me to be a confident advocate for this disease and for the rare disease community.
Through further training events, like EURORDIS’ Rare Disease Week in Brussels, Ruth honed her skills in engaging with policymakers, forging connections that amplify the patient perspective to drive tangible change for her community and, in turn, her family.
All the skills and knowledge learned in the EURORDIS trainings have empowered me to be a confident advocate for the specific disease in my family, but also to speak for the rare disease community in general. Without the Open Academy training and the confidence, it has given me, this would never have happened.
One example is when she successfully managed to leverage her developed skills to obtain the signatures of German MEPs on a letter addressing Ursula von der Leyen, President of the European Commission, calling for an overdue rare disease strategy. This year, she has been invited to a conference by the same MEPs to discuss her specific disease area, proving that one of the key tenets of the Open Academy.
Open Academy enables us to advocate better for the rare disease community. We learn from each other and share best practices.
For those considering enrolling in an Open Academy course, Ruth offers sage advice: “Take the chance to connect, listen to more experienced patient advocates, learn from best practices – and then you can make a difference for people living with a rare disease.”
Explore the Open Academy courses and embark on your path to becoming a rare disease champion!
For more information, please contact Rachel Butcher, Open Academy Manager – Training Coordinator: rachel.butcher@eurordis.org