Recently, Genzyme Rare Community sent out an email survey to our patient advocacy organization subscribers. We wanted to know how we were doing. Is our content useful? What are we missing? Thank you to those who took that time to fill out the survey. In general, the majority of participants found the site useful and report that they read the blog regularly. Great! However, our favorite insights from the survey are focused on topics you want to learn more about. The most highly reported categories are: learning opportunities, strategies for increasing disease awareness, global insights and trends in rare diseases (for example, registries.) We are already at work looking for ways to focus more content around these areas.
Importantly, survey participants also reported that they want to hear from YOU – the Rare Disease Patient Advocates and Patient Group Leaders around the world. We couldn’t agree more.
Can you share what you know? Our blog is available to you to share your valuable voice and experiences with others. If you would like to be a guest blogger, please contact me or any other member of our Genzyme Rare Community team.
Have we missed something? We are going to keep our survey open so please keep on sharing your thoughts on how we can make this blog most valuable to you.
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