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About Helene

When I dreamed of being a writer, I never thought it would lead to becoming a nationally recognized patient and family advocate. I’ve been a published writer and journalist for over twenty years but I’ve focused on writing about, and trying to help, families in crisis since 2005. I do this because my own family has lived through years of our son’s medical crises and we were lucky enough to have a happy resolution.

Because of my writing and my efforts to be of service, I now proudly serve on the Board of Directors of Brightpoint Health, a major nonprofit provider of integrated medical and mental health care, and social support services to people challenged by health disparities in New York City. I’ve been appointed to the Patient Engagement Committee for the Society to Improve Diagnosis in Medicine (SIDM), a wonderful organization focused on solving the most common source of medical errors. And I’m thrilled to sit on the advisory panels for three major national studies on diagnostic error as their patient advocate expert. I’m a member of the American Society of Journalists and Authors (ASJA) and of the Association of Health Care Journalists (AHCJ).

The update on my son: he is healthy, in love, and working in the field for which he studied. I was only responsible for one of those but I revel in all three. I live in New York City with my husband who is the love of my life, very patient, and supportive.


I hope you’ll find this website helpful and informative. Please let me know what you’re thinking about, read and share my posts and articles with friends and family, and let’s all try to help one another to find answers or peace. 


​Helene Epstein helped our family identify a potential diagnosis for our daughter who suffered from a chronic, debilitating and undiagnosed condition. Through her contacts and research, she was able to identify a rare disease for us to explore - one that is new even to the CDC. My daughter's physician is grateful that he now can change her treatment and it is working. We are forever grateful to Helene.

Kellie Trivers

Fundraiser in St. Louis

Helene was a great speaker – interesting, informative, attuned to the audience. I thought the pace was great, the interest level was high, and I think it really woke people up to the issues... The program raised interesting issues and questions that all parents should be aware of. Other schools would definitely benefit from having Helene come in and
speak to parents.

Steve Wexler

Principal Data Revelations

Many thanks for inspiring families like mine to be change agents in our states when confronted with misdiagnosis, medical errors and harm; tough things for any family... I  particularly appreciated that you were able to... give me some actionable ideas.

Emily Paterson

Mother in NC

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