In a significant step forward for global vestibular advocacy, the Vestibular Disorders Association (VeDA) recently presented to a group of European doctoral students from the PROVIDE Network—an initiative designed to train the next generation of vestibular researchers. This collaboration brought together patients, clinicians, researchers, and advocates across continents to shine a spotlight on the patient experience and how it intersects with healthcare, research, and education.
What is the PROVIDE Network?
PROVIDE, which stands for Promoting Inclusive Vestibular Research and Education, is a European training program funded by the Marie Skłodowska-Curie Actions under Horizon Europe. The network includes 14 PhD candidates hosted by academic and clinical institutions across Europe. Their mission: to generate new knowledge, tools, and interdisciplinary collaborations that enhance the diagnosis and treatment of vestibular disorders. As part of their training, these young researchers are exposed to diverse perspectives—including those of the patients they ultimately hope to serve.
To that end, PROVIDE invited VeDA to present on the importance of patient advocacy in vestibular healthcare and how collaboration between patients and healthcare providers can drive meaningful change.
VeDA’s Message: Advocacy Begins with the Patient
Cynthia Ryan, VeDA’s Executive Director, led the presentation by introducing VeDA’s mission: to support and empower patients with vestibular disorders on their journey back to balance. She explained that many patients face long diagnostic delays, often seeing multiple doctors over several months or years. During that time, they may be told that their symptoms are “all in their head” or due to anxiety. VeDA serves as a lifeline—validating patients’ experiences, providing education, and connecting them with qualified healthcare professionals.
Ryan emphasized that VeDA is not just an information source but a catalyst for patient empowerment. When patients are equipped with knowledge, they can communicate more effectively with their doctors, ask informed questions, and participate actively in their care. This marks the beginning of advocacy.
From Isolation to Empowerment
The presentation focused on the many ways VeDA supports patients:
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Educational resources reviewed by vestibular specialists
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A provider directory to help patients locate vestibular-trained clinicians
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Peer support groups (online and in-person)
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A patient registry that contributes to research and informs better care
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Public awareness campaigns, like Balance Awareness Week and Steps-2-Balance
In addition, VeDA advocates at the systems level by participating in policy conversations, updating diagnostic criteria, and encouraging inclusion of the patient voice in research.
Patient Empowerment in Practice
Ryan shared practical tips for how patients can take an active role in their care:
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Prepare for doctor visits by tracking symptoms and bringing a support person
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Organize medical records and use apps for symptom monitoring
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Provide constructive feedback to clinicians
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Share their stories to raise awareness and reduce stigma
She also explained how patients can move from self-advocacy to community advocacy through blogging, podcasting, participating in health fairs, and even engaging in legislative efforts.
“Empowered patients are more than just recipients of care,” Ryan said. “They’re educators, storytellers, and changemakers.”
Collaborative Advocacy: Patients and Providers
The presentation transitioned to highlight how healthcare professionals can support advocacy. By listening to patients, involving them in decision-making, and treating them as partners, clinicians can improve outcomes and foster trust. VeDA encourages providers to:
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Stay current on vestibular best practices
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Join professional networks.
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Participate in awareness campaigns
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Refer patients to trusted educational resources like VeDA
Ryan shared VeDA’s video docuseries, Life Rebalanced Chronicles, as a tool for healthcare professionals to deepen their understanding of the patient experience.
Voices of Advocacy: Glenn, David, and Dana
Three VeDA Ambassadors—Glenn Schweitzer, David Morrill, and Dana Tress—joined the presentation to share their personal journeys and why they became advocates.
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David Morrill began his vestibular journey after a misdiagnosed stroke. He now leads VeDA’s Ambassador Board, coordinates support groups, and co-moderates one of the largest vestibular Facebook communities. David spoke about the power of community and how peer support can be transformative for those feeling isolated.
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Dana Tress, a physical therapist, founded “Dana’s Flock,” a global network of volunteers raising vestibular awareness. She shared how her clinical practice is rooted in listening to her patients and validating their lived experiences, while also working to educate fellow clinicians.
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Glenn Schweitzer lives with Meniere’s disease and tinnitus. He is the author of two blogs (Mind Over Meniere’s and Rewiring Tinnitus) and books and works as a wellness coach. Glenn discussed how writing about his experience helped him reclaim his life and build connections with others going through similar struggles.
Dr. Christian Chabbert, a French neurophysiologist and leading vestibular researcher, also joined the presentation to share how his scientific work has evolved into a broader advocacy mission. As part of his growing commitment to patient-centered care, Dr. Chabbert has spearheaded a European coalition of vestibular healthcare professionals and researchers to amplify awareness during Balance Awareness Week. Under his leadership, the 2024 initiative included nationwide efforts in France—spanning over 150 sites—with events such as radio interviews, television segments, free balance function testing, educational lectures, and patient-provider dialogues. He has also helped coordinate similar campaigns in Germany, the Netherlands, and Tunisia. Looking ahead to 2025, Dr. Chabbert is working closely with VeDA to launch a coordinated international campaign, including an online practitioner forum and a global “Balance Running” event. His vision is to unify global efforts, making vestibular disorders more visible and better understood by the public, the media, and healthcare systems alike
Each speaker offered a unique perspective but echoed a shared theme: advocacy is healing, not just for others, but for themselves.
Looking Ahead: Building a Global Movement
The session concluded with a Q&A, during which PROVIDE students asked insightful questions about the challenges and opportunities in vestibular advocacy. They expressed enthusiasm for incorporating patient voices into their research and acknowledged the value of working alongside advocacy organizations like VeDA.
For VeDA, this presentation was more than just an opportunity to inform; it was a step toward building a global network of collaboration. By connecting patients, clinicians, and researchers across borders, VeDA hopes to drive systemic change and foster a world where vestibular disorders are better understood, diagnosed, and treated.
“Making vestibular visible isn’t something VeDA can do alone,” Ryan said. “It takes all of us—patients, providers, researchers—working together to elevate awareness and improve lives.”
For more on the PROVIDE Network and their groundbreaking work, read VeDA’s blog post: Training the Next Generation of Vestibular Researchers
And if you’re inspired to get involved, visit vestibular.org to learn how you can become an advocate, support others, or access the resources you need to take the next step on your vestibular journey.
Watch the presentation here:
