The EveryLife Foundation, in Partnership with the Community Congress COVID-19 Response Working Group, Shares U.S Rare Disease Covid Vaccine Survey Results

Today, the EveryLife Foundation shared results from the COVID-19 Vaccine Survey developed in partnership with the membership of the EveryLife Foundation’s Community Congress COVID-19 Response Working Group. The survey was designed to better understand the rare disease community’s perceptions and information needs about a vaccine for COVID-19 and to inform policy engagement efforts. The survey was open to rare disease patients and caregivers from October 20 – November 4, 2020 and generated 1,479 responses. Thank you to all the participants who gave their time and effort to develop and complete this study. View the survey results.

Informed by the results of this survey, the EveryLife Foundation sent a letter to the Biden Administration in February to call attention to the rare disease community’s concerns regarding COVID-19 vaccines. These concerns included the availability of safe and accessible vaccine administration sites, the importance of broad information-sharing with specialists and primary care physicians treating rare disease patients, and the need for more education about the Emergency Use Authorization process to reassure the public about the safety and efficacy of the vaccines.

The EveryLife Foundation’s Community Congress partners are continuing to track and engage with policy leaders around rare disease community priorities and vaccine access .