New Survey for Rare Disease Patients Can Impact Policy

Living with a rare disease can come with some difficulties, whether those are physical, mental, or financial. It is estimated that 30 million Americans live with a rare disease, a little less than 10% of the population. In an effort to comprehend what it’s like living with one of these conditions, the EveryLife Foundation has created a survey, the National Burden of Rare Disease Survey. It is intended to build an understanding of the social and financial aspects of living with a rare disease.

About the EveryLife Foundation

This organization is non-profit and nonpartisan and aims to influence policies that will improve the lives of those with rare diseases. It does not speak for patients, but instead makes an effort to help patients’ voices be heard. It does so through education, training, opportunities, and resources.

The Survey

The National Burden of Rare Disease Survey aims to gain an understanding of the lives of rare disease patients in a financial and social sense. The hope is that the answers to this survey will provide a better comprehension of any burdens, which would then help create policies to help. Better policies could improve the treatment and diagnostic processes.

In order to fully understand the struggles that rare disease patients face, it is essential that every person answers the survey. They will remain anonymous, but will tell of their experiences: paying for caregivers, paying for treatments, and more. Anyone who has a rare disease and is interested in taking the survey can find out more here. The deadline is July 19th.

The answers of this survey will help to create policies that impact 30 million, hopefully bettering the lives of those with rare diseases.

Learn more about this survey here.

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