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The Many Faces of Rhabdomyosarcoma: 50 Stories


Please consider participating in Focus On Rhabdo’s educational initiative: “The Many Faces of Rhabdomyosarcoma: 50 Stories.”

While Rhabdomyosarcoma is the most common soft tissue sarcoma of childhood, most physicians will never have the opportunity to see or diagnose a case. It is a disease that has the propensity to metastasize early, meaning that any delay in diagnosis could further complicate the patient’s treatment and chances for long-term survival.

The aim of this project is to compile a set of patient stories into an e-book that can be distributed to pediatricians and primary care physicians around the globe, showing the many ways and locations that Rhabdomyosarcoma can present itself. It is not meant to be a primer on the disease, but rather a source of information derived from the experiences of patients and their families who have had to deal with the complications of this disease.

Since you will be revealing personal medical information, a HIPAA release form is required. Please know that no last names will be used in the publication of the material. Our aim is to use our experiences – good and bad – to highlight the insidiousness of this disease so that those who are stricken in the future will be diagnosed quicker – leading to a better outcome.

We are asking that you provide a written account – a story – of how you or your family member was initially diagnosed. Was there any delay – and what was the cause of the delay? What was the location of the disease (head, neck, genitals, extremities, etc.) and what stage was it. Each story will be unique. The more information you provide the better the educational experience will be for those who read it. We will edit out any information that we feel to be inappropriate but you will have the opportunity to approve the final copy prior to publication.

In addition, we would like a photograph of the patient alone or with their family that can be used with your story. The photograph is totally optional – we fully understand if the patient’s family does not wish to provide one.

Download the Physician Information Program and HIPAA Release Form by clickingStories-HIPAA Release