Change for Good in Rare Disease

Learning from the lived experience

With treatments for rare diseases being few in number, adherence becomes that much more critical. To gain a deeper understanding of the reasons for intentional non-adherence, we administered validated tools to a global sample of patients with rare diseases.

The Intentional Non-Adherence Scale* assesses the reasons why a person may choose not to take their medication as prescribed.

Our research showed that the highest-ranking factors were related to Resisting Illness, suggesting that helping patients with adherence may start with disease acceptance.

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Top Intentional Non-Adherence Factors


“Because I want to lead a normal life again”


“Because I want to think of myself as healthy person again”


“Because it is inconvenient to take all the time”


“Because it is good not to have to remember”


“Because it reminds me that I have an illness”