patient communities Patient Videos Rare Diseases

Using Video to Communicate about Rare Diseases

Screen Shot 2013-04-09 at 3.49.29 PMFacing Fabry Together is an educational film, produced by Genzyme, that tells the captivating stories of four families from around the world that are living with Fabry disease. (Genzyme is a biotech company that started in Boston and has since been purchased by Sanofi. Genzyme markets Fabrazyme, a drug used to treat patients with Fabry disease.) Fabry is a rare hereditary disease. According to the Fabry Online Community, “It is one of a family of hereditary diseases called lysosomal storage disorders that affect the way certain important chemicals are processed in the body.” (Source: Fabry Online Community.)

Through patient, family, and physician testimonials, this film highlights the common experiences shared by those with Fabry disease and raises awareness for the disease. You can view the video below:

As I conducted research for this blog post, I found that Genzyme is doing much more than using video to create understanding of rare diseases. It has created an online community for people with Fabry. The site offers patients all kinds of support and resources. It is a terrific site but it lacks one important element: It doesn’t have a forum where patients and family members can  share their experiences with one another. If there is a forum element, I wasn’t able to find it on the site. Without the forum functionality, it becomes a very useful and valuable website, but not an online community. There is no listening mechanism and no way for patients to reach out to one another. Perhaps the folks at Genzyme didn’t want to supplant the Fabry support groups that already exist online. As you would expect, they provide links to Fabry support groups and Fabry organizations.

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2 comments on “Using Video to Communicate about Rare Diseases

  1. Dana Smith

    great 1 !

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