The organisation linked to a Woking man whose heart condition caused him to die suddenly and come back to life has published a survey suggesting health trusts are unprepared to deal with similar cardiac death.
Bradley Farrow, from Sheerwater, suffers from Brugada syndrome that causes his heart to race and move into cardiac arrest.
He helped launch a support group in 2002 linked to Cardiac Risk in the Young, where young people could meet to discuss the syndrome.
CRY was instrumental with other campaigners for securing the implementation of Chapter Eight: Arrhythmias and Sudden Cardiac Death into the Coronary Heart Disease: National Service Framework.
The framework sets out guidelines on how NHS services should identify people who are at increased risk of sudden cardiac death and how to assess them and their families to reduce their chances of dying from an arrhythmic condition.
Results published by CRY show a year since chapter eight, 97 per cent of trusts interviewed had not developed a strategy for implementing the chapter's guidelines for young people.
Nearly all trusts interviewed were aware of chapter eight.
Wendy Lockwood, head of communications at Surrey Heath and Woking Primary Care Trust, said: "We were not surveyed but we are working on strategies to deliver the national service framework."
Alison Cox, founder and chief executive of CRY said: "The research we had commissioned confirms our worst fears, that very little has been done to address what we perceive to be a growing problem among young people.
"Electrocardiogram testing in the young is vital if we are to reduce the number of unnecessary deaths.
"But this needs to be followed up with a referral to a cardiac specialist."
