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Patient Partnership in Rare Disease Research: Insights from EURORDIS Open Academy Alumni
Currently, 94% of rare diseases have no specific treatments. Effective treatments are crucial as they can alleviate symptoms, slow disease progression, and, in some cases, even cure the condition.
For people with rare diseases, these treatments can be life-changing, improving quality of life and enabling greater participation in society. Patient-led research plays a vital role in advancing our understanding and discovering new diagnostic and treatment methods. Collaboration between patients and clinicians is essential for translating scientific research into innovative clinical solutions that address the unmet needs of the rare disease community.
The EURORDIS Open Academy aims to equip participants with the knowledge and skills needed to become effective partners in various healthcare settings. In the latest instalment of our “Insights from Open Academy Alumni” interview series, we spoke with Ana Pataki, President of “BRoMoLoGoS,” a patient organisation representing people with Phenylketonuria (PKU) in Serbia. Ana shared how the training has empowered her to advocate for herself and others in the Phenylketonuria (PKU) community within a research context. Driven by a passion for understanding how groundbreaking research translates into real benefits for those affected by rare diseases, Ana joined the Open Academy School on Scientific Innovation & Translational Research, formerly known as the EURORDIS Winter School, in March 2022.
The Winter School provided me with deep insights into the complexities of pre-clinical research and its real-world applications.
Since then, Ana has leveraged this knowledge to increase collaborations between her organisation and rare disease researchers, bringing the patient voice to the forefront of these partnerships. She also notes the personal growth she experienced, particularly in her confidence and ability to communicate with colleagues, which has helped her expand and strengthen her organisation’s network and impact.
With the skills I acquired, I successfully advocated for increased collaboration between our organisation and research entities. This led to a more patient-centric approach in ongoing projects, ensuring that the unique needs of our community are prioritised in scientific efforts.
Ana highlights that the training offers much more than conventional learning environments. The Open Academy syllabus is specifically tailored to the practical needs of rare disease advocates like Ana, with immediately applicable learnings allowing for instant improvement in the participant’s advocacy actions. The in-person training also fosters a supportive community that encourages knowledge exchange and network expansion, ensuring that the learning process extends beyond their time in the classroom. Participants become an integral part of the alumni community, continuing to benefit from the connections made during the training.
The insights gained are not just theoretical but are immediately applicable, making it an invaluable resource for anyone looking to make a real impact in their field. The connections we’ve made and the supportive community we’ve built make the learning journey even more enriching. I wholeheartedly recommend the Open Academy training for its transformative impact.
Our Open Academy alumni everywhere continue to support one another in leading the fight for lasting improvement for the rare disease community. Whether you’re a rare disease advocate or starting out in your research career, make a difference today by joining the EURORDIS Open Academy!