Debbie Hellenbrand is a patient advocate and professional speaker from the Netherlands. After years of medical neglect and the birth of her two children, she and her children were diagnosed with Ehlers-Danlos Syndrome (EDS). Their lives changed when they finally found a specialist who not only understood EDS but remains involved in their care today. His support inspired Debbie to speak out against the medical neglect and allegations faced by patients living with EDS and related conditions.
Debbie co-organized the first European Ehlers-Danlos Conference in Maastricht in 2018. She represented The Ehlers-Danlos Society at the International Council of Nurses in 2019, presented at the World Congress on Rare Diseases in Dubai in 2019, and in 2025 spoke at the World Orphan Drug Congress on behalf of Pathways To Trust. Debbie also provides guest lectures at universities, medical schools, and healthcare events across Europe. She and her children were featured in the award-winning documentary We Are Visible by Karina Sturm.
Debbie’s mission is to transform the medical experience for people living with rare conditions such as EDS. She strongly believes that when children with EDS receive proper medical care early, they have every chance of a bright and fulfilling future—an outcome that benefits everyone. She also advocates for stronger, more respectful relationships between patients and healthcare professionals. Through her own experiences, she has seen how compassionate medical partnerships can improve outcomes, empower patients, and inspire change. For Debbie, being able to advocate not only for her children but for others around the world feels like a true privilege.
(Check Linkedin for more)
