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Patient Stories

Twitter Chat Offers Insight Into Rare Diseases

A rare disease can be isolating, but those who have one may feel a sense of community when patients, families and health care providers living with rare diseases get together on social media to discuss the topic. 

That’s exactly what happened when Gillette communicators and Scott Schwantes, M.D., a Gillette pediatrician and palliative care specialist, joined forces to spread awareness and share insight into rare diseases during a Twitter chat.

A Twitter chat allows people to gather for a real-time conversation about a specific topic using a common hashtag. This rare disease Twitter chat was hosted by ABC News’ medical correspondent Dr. Richard Besser in honor of Rare Diseases Day Feb. 29, 2016.

ABC rare diseases Twitter chatThere were quite a few major health and government organizations (and their medical experts) on the chat including the National Institutes for Health, the Food and Drug Administration, the National Organization for Rare Diseases and American Academy of Pediatrics. Gillette communicators shared content from its main Twitter account and Schwantes shared medical expertise from his personal account.

Schwantes was a top 10 influencer during the chat – so much so that his tweets were shared 55 times and favorited many more during the hour-long chat.

In total, nearly 450 people sent about 2,700 tweets during the rare disease chat netting a grand total of more than 32 million impressions. Engagement among tweeters was high, too. The average participant sent six tweets.

To recap, here are a few highlights sent from Schwantes' Twitter handle:

The good news is that it doesn’t matter if you missed the chat. You can review the entire conversation and gather all of the medical information at this link. If you want to get more insight into the chat participants and major influencers, you can view the analytics of the conversation here.

Watch Gillette social media accounts for news on upcoming Twitter chats you can participate in. If you have general questions about a chat or would like to join one, drop us a note.