The EveryLife Foundation for Rare Diseases has launched a nationwide National Burden of Rare Disease Survey to measure the full implications, economic and social, of living with rare disease in the United States.

People with rare diseases know that the impacts of such conditions extend beyond just medical bills and treatment costs, and include complex financial and social burdens.

Many costs for necessary treatments and services — including paying for medical devices, home accommodations, and travel costs incurred by caregivers and families — do not appear on medical bills. Although up to 30 million Americans are affected by rare diseases, no U.S. study has examined the true cost of these conditions on a large scale.

By addressing this knowledge gap, the Foundation hopes to raise awareness, inform policy proposals, and improve the lives of patients and their families for years to come.

The EveryLife Foundation collaborated with the rare disease community and health economists to develop the survey. It has 39 questions, covering topics from direct medical fees to indirect costs, such as lost productivity, and non-medical costs, including home modifications, to education accommodations and personal caregivers.

The survey, being conducted through July 19, is expected to take no more than 45 minutes to complete. Participants can save their progress and return to the survey at any time.

All rare disease patients and family members living in the U.S. are encouraged to participate, although the Foundation asks that only one survey be completed per family. In particular, patients or family members should consider participating if they are familiar with their household finances and knowledgeable about their family’s rare disease-related healthcare needs.

Patients under age 18 are asked to have an adult who is familiar with their condition answer the survey for them. In cases where more than one individual in a household has a rare disease, the Foundation asks that survey questions be answered based on the experiences of the most severely affected person.

All information collected over the course of the survey will remain anonymous. EveryLife stresses that it will not disseminate any information that could identify any participants. Only the aggregated results will be made public, in a medical journal later this year.

Overall, the Foundation expects the National Burden of Rare Disease Survey to become a powerful tool through which rare disease communities can have their experiences accurately communicated to policymakers. To make sure the study  is representative of the entire rare disease population in the U.S., the foundation is asking community members to share the survey with their networks. A promotional toolkit is available here.

Any further questions regarding the survey can be directed to [email protected].