Leading Rare Disease Patients Out of the Shadows
May 25, 2016
Print: May 2016
By Nadine McGowan
For people living with a rare disease, the empowered and informed patient prototype is not necessarily typical. Often, we find people living in some form of denial, either not admitting there’s a health problem at all or not acknowledging the impact it has on their quality of life. Others, not knowing of different options, are resigned to their suffering. HCPs can correct that notion, and in many cases they do. But often there’s a lack of knowledge and awareness due to the rarity of the disease, so even people who go to a doctor for their condition often stay in the shadows, unable to obtain optimal care. In her article, Nadine explores how life science companies can help improve this situation and guide people to find new empowerment.
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