Founding Journey
I come from a family of four, and three of us have been diagnosed with Carney Complex—a rare genetic condition. As far as we know, we are the only ones in Switzerland living with this diagnosis, which made the experience incredibly isolating.
Determined to find others who could relate, I began a global search online. That search led me to create a Facebook group—just a small step toward breaking the isolation, sharing experiences, and building community.
While I’ve had the support of my family and my partner throughout this journey, this initiative was something I started on my own. I’ve also been fortunate to receive guidance from knowledgeable and compassionate medical professionals. But I know that not everyone with Carney Complex has access to the same kind of care and support.
As the community grew, others began to contribute – sharing their experiences, supporting one another, and building something bigger than I ever imagined. Today, this space is a collaborative effort, held together by the strength and openness of its members.
Vision
With only 750 documented cases of Carney Complex worldwide, this website aims to encourage collaboration among researchers, healthcare professionals, and individuals affected by the condition to promote a deeper understanding and improve care.
Mission
This website is created by an individual living with Carney Complex to support and empower others who are affected by the condition. It also aims to provides resources for healthcare professionals to assist with early diagnosis, treatment, and ongoing monitoring.
The mission includes:
- Education
Offering the latest research and clinical information to everyone involved in managing Carney Complex. - Building Awareness
Expanding recognition and understanding of Carney Complex within both medical communities and the general public. - Support
Connecting and providing resources for individuals affected by Carney Complex, as well as for their loved-ones, healthcare providers and researchers. - Research and Information Sharing
Ensuring access to the most up-to-date research and clinical data on Carney Complex.