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Patient Stories

Childhood Cancer Hearing Loss Patient Focused Drug Development (PFDD) Meeting

The pediatric patient population with chemotherapy-induced hearing loss represents a segment of the cancer survivor community with a severe burden of disease with great unmet medical need. An externally-led, FDA-approved Patient Focused Drug Development (PFDD) meeting on September 13, 2018 near Washington, DC will explore these issues in-depth.


A Parent’s Silent Prayer: Preventing Hearing Loss for Childhood Cancer Survivors

“Your child has to be alive to experience side effects.” That statement is heard by every parent reviewing treatment protocol for a child with a high risk pediatric cancer. At that moment, the focus is on keeping a child alive and achieving No Evidence of Disease, or ”NED” as it’s commonly referenced.


Mother and Son with Cisplatin-induced Hearing Loss

At the 49th Congress of the International Society of Paediatric Oncology held in Washington D.C., October 12-15, Rare Disease Report spoke with Colleen Mulvena about the hearing loss she developed as a result of being treated for brain cancer as a child and later seeing her own son not only develop that same cancer but also the hearing loss that came with the treatment.


The Real Cost of Hearing Aids

Hearing aids are expensive—especially for children who likely need those with blue tooth capabilities to follow along at school.


Hearing Aids and Strong-willed 5-Year Olds

Hearing loss can dramatically impact a child’s ability to keep up in school and socialize with friends. At the 49th Congress of the International Society of Paediatric Oncology held in Washington D.C., October 12-15, Rare Disease Report spoke with Jenna Mortensen, the mother of a son who developed hearing loss as a result of the chemotherapy used to treat his cancer.

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