Creating a poll and infographic for insight into your rare disease

Case study: Behcet’s syndrome community poll and infographic


One of the moderators emailed the RareConnect team and suggested a poll of the international Behcet’s syndrome community to better understand what issues patients around the world were facing. The moderator had a few questions in mind. We also consulted the EURORDIS Care surveys that were done as a part of the Voice of 12,000 Patients book.

Voice of 12,000 patients book


We emailed the proposed survey to all moderators and patient groups involved in the community. All groups agreed to the survey and contributed their questions, edits to the draft poll, and ideas for the kind of outcomes we were looking to highlight. This took the course over several weeks.

When all partners had offered feedback to the poll, we used our EURORDIS account on Survey Monkey to create an 18 question poll.

Survey Monkey allows you to embed your polls in a website so we chose to add the survey to the Behcet’s community on RareConnect. We also collected responses via a web link. We asked our partners to share the link and we promoted the poll in many different groups and on social media.


Over the course of 6 weeks, we received 194 responses, including thoughtful reflections on some of the open-ended questions that were asked like, “What would you tell some of the doctors who misdiagnosed you?”

The poll was closed and the anonymized results were analyzed with the partners. For the open-ended question responses, the most frequently mentioned comments were highlighted. Survey Monkey automatically shows you the percentage and raw number of responses to poll questions. The graphs of results were exported and this poll summary page was created on RareConnect.

It was then decided to create an infographic from some of the questions to visually illustrate the responses and raise awareness of the disease. There are a variety of free tools that help you design infographics online.

We shared the infographic page on RareConnect on social media, with partners, in groups, and through an email campaign to participants in the poll. Registered members and community visits both increased as a result. The infographic was then translated across all languages, and even a Chinese patient group translated the infographic to share with their members.

Want to create a poll and infographic with the other patient associations in your community? Write us at and let’s talk about possibilities.



























































Here is another infographic from the Marfan Foundation

marfan syndrome infographic

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