Could you maybe explain to us how it came to life and what have you developed?

Well, I'm in touch with many cardiologists in the ERN GuardHeart, and something I've often heard is that most families who have lost a young family member to sudden cardiac death refuse to have an autopsy performed.

Or the clinicians tell us it's so difficult to speak with a family right after such a terrible loss.

That's why three of us patient advocates have joined forces.

Lorraine, who lost many family members to the rare channelopathy CPVT.

Esther, who lost her son, Angel, to the rare cardiomyopathy ARVC, or better ACM, arrhythmogenic cardiomyopathy, at age fifteen.

And I, who lost my daughter, Judith, to ARVC at age fourteen, and two years later, my niece at age twenty-three.

Ruth, how did the life experience of you and all your fellow patient advocates that influenced the way you developed the letter?