EveryLife Survey – What’s the cost of rare disease to YOU?


Take this Survey by July 19!

CureDuchenne is supporting the EveryLife Foundation for Rare Diseases in their effort to conduct a survey of families living with rare diseases. This survey is important because it is meant to listen to families about how living with a rare disease has impacted their whole lives: difficulty with insurance coverage, lost work opportunities, costs of changing your home or vehicle to accommodate.

Gathering the real cost of living with rare disease, not only the cost of medical care, is extremely valuable. When insurance companies are considering covering rare disease treatments, they are weighing the value of that treatment – figuring out if money is saved by providing coverage – and without real knowledge of how much rare diseases cost, they may be making those decisions based on incomplete facts. We want to encourage the Duchenne community to take this survey so that your family’s facts and figures are a part of this effort that will inform policy proposals and potentially improve lives of patients and families over the years to come.

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