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Eurordis - Rare Disease Europe

28/05/2024

Championing Rare Disease Advocacy: insights from EURORDIS Open Academy Alumni


Launched in 2008, the EURORDIS Open Academy equips individuals from across Europe’s rare disease community with the knowledge and advocacy skills to drive positive change. Continuing our series of insights from Open Academy Alumni, today we share the story of Christian (Chris) Pfeuffer, a member and patient advocate of Deutsche Gesellschaft für Muskelkranke e.V. (DGM), the largest German patient organisation for neuromuscular disease.

Dedicated to making the link between patient advocacy and data, Chris completed his Masters in Economics with an internship and dissertation on patient engagement in digital health and has recently joined the EURORDIS Digital and Data Advisory Group.

Chris’s engagement with the Open Academy started with the EURODIS Leadership School in 2021 before going on to complete the Medicines Research & Development School and the Scientific Innovation & Translational Research School.

In our interview with him, Chris shared his experience and how the schools impacted his advocacy and his approach to healthcare policies. 

I particularly enjoyed the interactive learning experiences and networking opportunities, which allowed me to connect with peers and experts in the field, further enhancing my understanding and passion for rare diseases advocacy.

The Open Academy’s interactive and collaborative approach, providing not only comprehensive training and knowledge but also fostering a collaborative environment of community and collaboration, was greatly appreciated by Chris. This environment of mutual support, shared goals and common cause is crucial to driving meaningful change in the rare disease sector. Participating in the Open Academy also built Chris’s capacity to pursue advocacy. In his words, the Open Academy helped him become “an empowered patient and a role model for others” in the rare disease community, honing a range of practical skills. 

Throughout the training, I gained valuable skills in rare disease epidemiology, patient engagement, regulatory processes, health technology assessment, and drug development, which have empowered me to make a meaningful impact in the rare disease community.

The skills and knowledge Chris acquired during the Schools translated into tangible actions and initiatives, such as utilising his training to influence healthcare policies at a national level and contributing to the bettering of patient care standards. Chris’s story is a powerful example of how the EURORDIS Open Academy can empower individuals to become effective advocates for the rare disease community. All in all, Chris has been able to continue to ensure the voices of the rare disease community are heard and improve their inclusion in the important decision-making processes. 

Reflecting on his journey, Chris highlights the importance of levelling the knowledge gap in the healthcare system, underscoring the importance of equipping patient advocates with the proper tools to make a difference.

‘The reduction of information asymmetry is the key driver for a patient’s or caregiver’s success to co-create and become an equal member in shifting healthcare to the better. The Open Academy is  an enabler of this co-creation on many levels.

As an alumnus of the EURORDIS Open Academy, Chris continues to inspire. His achievements serve as a reminder of what can be accomplished through education and collaboration. 

Whether you’re a patient, caregiver, advocate or policy-maker, make a difference today by joining the Open Academy!

 

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