Rare Disease Report
Patients & Caregivers


The survey consisted of 12 multiple-choice questions to determine the physical, emotional, and informational challenges these patients face.
The series of scientific and clinical breakthroughs began with a curious husband trying to understand his wife hearing loss
The added stigma of hearing loss to an already stigmatized child (due to cancer) is of great concern.
the detrimental effects the hearing loss has had on her son’s learning and socializing is a great concern
Hearing loss can  impede a child’s ability to learn. Special assistance is available at schools but to qualify can be tricky.
the cost of hearing aids is a major problem given the high incidence of them getting lost or damage due to children being children.
Its a daily struggle. The conversations that happen or don't happen in our household are a struggle.
Dr Alan Brown tells RDR about FCS as a disease state, the negative effects experienced by patients, and the potential for a therapy coming through the pipeline.
The FDA approved gene therapy Yescarta for the treatment of some patients with relapsed/refractory aggressive B-cell non-Hodgkin lymphoma (NHL).
In the cisplatin alone group, 67% of patients showed signs of hearing loss compared to only 37% in the cisplatin + sodium thiosulfate group.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.