Rare Disease Diversity Survey
Thank you for your interest in the Rare Disease Diversity Survey. The goal of the survey is to learn about the experiences and challenges of individuals with rare diseases and those who care for individuals with rare diseases. The survey will focus on people of color and other underrepresented communities. This survey is made possible through a grant provided by the Black Women’s Health Imperative Rare Disease Diversity Coalition (RDDC) who partnered with the National Organization for Rare Disorder to develop and implement the survey.
We estimate it will take about 20-30 minutes for you to complete the survey.
Participating in this survey is voluntary, you can stop the survey at any time and your responses are anonymous. By entering data in the survey, you are consenting to it being used for research and to support the needs of the rare disease community.
The RDDC will be the owners of the data you provide in the survey. The RDDC, NORD, and their approved partners will be analyzing the data and sharing results and conclusions based on the data. They will share the findings with the rare disease community once they are available.
The survey data that our community provides will help to inform future efforts to bring rare disease experts, health and diversity advocates, and industry leaders together to identify solutions, overcome barriers faced by rare disease patients and their families, and help amplify diverse and marginalized perspectives in rare disease advocacy and research.
If you have a rare disease and take care of someone with a rare disease, please answer the following section in the survey from your experiences as an individual with a rare disease.
If you take care of more than one person with a rare disease, please answer the following sections in the survey thinking about the experiences of the person with a rare disease who faces the most challenges to living their life to the fullest. If you wish, you can complete the survey multiple times for different people.
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