In February 2020, we presented a poster at NIH Day during Rare Disease Week on Capitol Hill titled: Insights From Closed Social Networks Advance the Understanding of Commonalities Between Rare Diseases. For this poster, we identified key burdens (pain, anxiety, fatigue, and infection), key treatments or management techniques (diet, drugs, surgery, and medical devices), and 10 major drugs that came up across multiple diseases. We counted the times these burdens, treatments, and drugs were mentioned in the conversations and then normalized the counts for comparison.
For the full poster, click here.