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“Great things are done by a series of small things brought together.” —Vincent van Gogh

As I began defining a SMART goal for the Rare Beacon Patient Group Mentoring Programme 2026-2027, I found myself at a crossroads. My ambitions as a mentee for the rare kidney disease community are vast, but as any advocate knows, to lead effectively, you must first find your “North Star.”

To find that clarity, I stepped away from the data and into the arena.

The Power of Horse Coaching

Guided by my mentor, Diana, I participated in a horse coaching session that proved to be an incredibly grounding and transformative experience. Standing alongside Carmen, a magnificent black horse, I felt an immediate, raw respect for the strength of nature.

Horses don’t care about your titles or your to-do lists; they respond to your authentic presence. During an intuitive “pick a card” practice, I chose an image of a herd of horses—different sizes and colors—all running in one direction. 

Moving forward together.

In that moment of stillness with Carmen, the “building blocks” of my vision for the next two years finally unfolded.

From “Managing a Disease” to “Living a Life“

For patients with rare kidney disease, medical milestones like dialysis and transplantation have been absolute game-changers. They moved us from a terminal diagnosis to one of survival.

But as a patient representative, I see the hidden “medical tax” these patients pay: the grueling routine of dialysis, and after a kidney transplant the constant vulnerability to infection and the heavy side effects of immunosuppressants. Standing in that arena, it became clear: our mission isn’t just to help patients survive—it is to help them thrive.

The Strategic Building Blocks

By honoring the “power of the herd,” I’ve identified four essential pillars to guide our mentoring program:

• Empowering Self-Management: Strengthening patients’ own direction so they lead their care journey with confidence.
• Improving Access to Appropriate Care: Ensuring that high-quality, specialized treatment is a right, not a privilege.
• Prioritizing Prevention & Early Diagnosis: The ultimate goal is to stabilize kidney function before it deteriorates. Every successful journey begins with the right diagnosis.
• Connecting Innovation to Impact: Bridging the gap between breakthroughs like precision medicine & innovations of new medicine and the real-world benefits for patients in their daily lives.

Moving Forward Together

Just as a herd finds its strength in unity, we are moving toward a future where “Quality of Life” is the primary measure of success. The road to prevention is long, but as I learned from Carmen, it requires both quiet strength and a clear direction.

With these building blocks in place, we are no longer just reacting to a disease—we are running toward a future where patients can live their lives to the fullest.

Would you like to learn more about horse training sessions? Check this website: Stichting (On)Beperkt vooruit!

Special thanks to Diana Kwast-Hoekstra MScN.RN for facilitating this horse-coaching session, which proved to be a truly powerful and inspiring experience.