CardioGen Romania: From a Family Diagnosis to a National Pillar of Support

In the world of rare and genetic cardiovascular diseases, the journey often begins with a single heartbeat—or, in our case, a life-altering diagnosis. CardioGen was born in 2021 out of a profound necessity to bridge the gap between clinical excellence and the daily realities of living with a Genetic Cardiac Disease (GCD) in Romania.

Our Roots: A Mission Born of Experience

The seeds of CardioGen were sown in 2019 when my husband, Radu, was diagnosed with Hypertrophic Cardiomyopathy (HCM). Navigating the complexities of a genetic condition made us realize that patients in Romania needed more than just a prescription; they needed a community, specialized information, and a voice.

Together with another dedicated patient, the three of us founded CardioGen to represent those affected by cardiomyopathies and channelopathies. Our mission was clear: to support patients and their families in this new journey while acting as a reliable partner for the clinicians who treat them.

A Year of Loss and Legacy

In December 2024, our community and my family suffered an unimaginable loss. Radu, our president and the heartbeat of this organization, passed away suddenly.

The year 2025 has been a testament to our resilience. While we faced immense emotional and logistical hurdles in reorganizing our leadership and updating our statutes, the mission Radu started never wavered. Today, I lead the organization alongside Alexandru and Monica, whose great support has ensured that CardioGen remains anchor for others. We have turned our grief into a renewed commitment to guide patients through their often-frightening medical journeys.

What We Do: Supporting the Journey

CardioGen operates on the belief that a patient who understands their disease is a patient who can better manage it. Our core activities include:

  • Interactive Education: We host regular webinars on topics specifically requested by our members—ranging from navigating sports and physical activity with a cardiomyopathy to managing daily life with a cardiac device.
  • Direct Support & Community: In October 2024, we hosted a major live meeting in Bucharest. This event provided a vital platform for direct communication, allowing patients to interact face-to-face with specialists and, most importantly, with each other.
  • Patient Resources: We have printed and distributed 2,000 HCM patient guides to major medical centers across Romania, including the “C.C. Iliescu” Center of Expertise at Fundeni Hospital.
  • Awareness Campaigns: The Global Heart Hub digital initiative, “Think Cardiomyopathy,” focuses on early symptom recognition and the importance of family screening to prevent sudden cardiac death.
  • Fundraising & Resilience: To fund our projects and prove that a diagnosis doesn’t define one’s limits, we organized a high-altitude fundraising expedition to Mera Peak in Nepal.
  • Clinician Collaboration: We serve as a link between patients and specialists, advocating for better access to genetic testing, advanced diagnostics, and specific treatments.

Looking Ahead: The Human Side of GCDs

Our goals for the near future are focused on the “invisible” side of cardiac disease. We aim to:

  1. Expand Psychological Support: Recognizing the high burden of anxiety and trauma associated with GCDs and sudden loss, we are working to offer professional psychological counseling for patients and their families.
  2. Enhance the Patient Journey: By mapping the hurdles in the Romanian healthcare system, we hope to streamline the path from symptoms to expert care.
  3. European Collaboration: We are eager to share our local expertise and learn from the resource-rich environments of our European partners.

Read more and contact CardioGen (RO) – ERN GUARD-Heart