National Burden of Rare Disease Survey

July 7, 2020

Living with a rare disease can significantly impact patients and families both financially and socially. To better understand these impacts, the EveryLife Foundation for Rare Diseases has partnered with the Lewin Group to develop an important survey that looks at expenses incurred by families living with rare diseases. These costs are important considerations in healthcare decision-making that could impact patients’ access to medicines or other healthcare services. The results of this study will be used in discussions with policymakers to advocate for policies to improve the lives of people with rare diseases and their families.

AE Alliance supports this important effort from the EveryLife Foundation. Please take a moment to fill out this survey, so AE will be represented in this study as well, and we can advocate specific for policies to improve the lives of our AE community.

Please go to and take the survey.

The deadline to take the survey is Sunday, July 19th.