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A Great Example of Web 2.0 in the Rare Disease Community

Posted by | 9:04am on Wednesday, September 24, 2008

Mothers with vWD are sharing their own stories of diagnosis and treatment to encourage more open communication and family awareness. 

One of the hottest issues right now is how pharma companies can appropriately engage in web 2.0/social media tactics that support and engage chronic disease communities while falling within the FDA limits of what they can attach their names to. Project Red Flag is a great example.

Project Red Flag is a promotion created by a group of moms who want to spread awareness about Von Willebrand’s Disease (vWD), an often overlooked bleeding disorder that occurs in women. It has been shown to cause heavy menstrual periods and other types of bleeding. Mothers with vWD are sharing their own stories of diagnosis and treatment to encourage more open communication and family awareness.

The project is supported by CSL Behring and they get prominent pr on the video, the website, etc. as a supporter. But National Hemophilia Foundation is the one actually spreading the word and promoting it. The CDC is also a partner.

The project includes a video, phone line, email opportunity, and a website with information, story opportunities, a discussion board, and a hefty resource section that includes a scholarship, binder, webcast, presentation with speakers’ notes, awareness video, pr video, tip sheet for living with, fact sheet, etc. much of it in both English and Spanish.

And here’s another example of good pr for a pharma company supporting social networking when a Von Willebrand’s discussion group was formed by a blogger who took matters into her hands, with the help of a CSL Bering rep and a vWD patient. Together they made You, Me & vWD.

About Wendy White

Since founding Siren Interactive in 1999, Wendy has been recognized as a thought leader at the intersection of niche pharma brands, patient empowerment and online marketing. Her vision for how the internet can facilitate interactions and provide crucial information that patients, caregivers and their healthcare providers previously struggled to find has propelled Siren to the forefront of relationship marketing for rare disorder therapies.

View other posts from Wendy

  • http://www.madcowramblings.com Chris

    Thanks for mentioning youmeandvwd.com. That site was needed for a long time and thanks to our CSL Behring reps introducing us, Jessica and my husband and I were able to pull it off. Hopefully other vWD patients and family members/care givers will benefit from it.


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