Since the start of the COVID-19 pandemic, many in the rare disease community have faced disruption to their lives and medical care. Heightened concerns about the risk of infection have resulted in the need for prolonged precautions regardless of what stage of reopening their location is in. Overall, the rare disease community has gone to extreme lengths to take measures – including foregoing care, sacrificing financially, socially, academically, and professionally – to reduce the chances of coronavirus exposure. Scientific collaborations to discover and test potential COVID-19 vaccines may soon result in the possible approval of vaccines, but the approval of vaccines would only be one consideration out of many important factors that those in the rare disease community must consider.
The EveryLife Foundation, in partnership with the Community Congress COVID-19 Response Working Group is conducting a survey to better understand the rare disease community’s perceptions and information needs about a vaccine for COVID-19 once one is approved.
By completing this survey, you are helping to ensure EveryLife and partners in the rare disease community can:
- Represent your concerns related to a safe and effective vaccine in advocacy efforts.
- Advocate for the importance of transparency and information sharing about the benefits and risks associated with a vaccine.
- Understand how the rare disease community will approach decision making when a vaccine is available.
- Advocate for ongoing policy changes that will help keep the rare disease community connected even as a vaccine is rolled out and COVID-19 protections are rolled back.
Take the U.S Rare Disease COVID Vaccine Survey
Thank you for taking the time to complete this survey. On average, it should take approximately 10-15 minutes to complete. No personal contact information is requested, and all responses are anonymous. Anyone in the U.S., 18 and over who has been diagnosed with at least one rare disease, or who provide care for an adult or child with a rare disease, is eligible to complete this survey.
Please stay tuned to the EveryLife Foundation’s COVID-19 Action Center in the coming months to hear what we learned and how we are using the information to advocate for positive change.
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About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
A disease is defined as rare when it affects fewer than 200,000 people in the United States. On average, rare disease patients must wait an average of six years after symptoms first present before receiving a proper diagnosis. Ninety-three percent of the 7,000 known rare diseases have no U.S. Food and Drug Administration-approved therapies. Fifty percent of rare disease patients are children, thirty percent of whom will not live to see their fifth birthdays.
