pharmaphorum November 23, 2022
Thomas Michalak

Each person living with a rare disease has a unique experience of their condition, but all will have faced similar challenges. They have suffered from an overwhelming diagnosis experience that has left them feeling misunderstood, isolated, and desperate for someone to help them connect symptoms and make sense of the sheer volume of information.

Many will also face barriers to care, where access to specialists is limited and often geographically out of reach. That’s where technology coupled with user-centred design can help – bringing solutions and convenience to these pain points and positively impacting people’s well-being.

More frequent data points are needed to get the whole picture on rare diseases

Consultations and clinical trials are often few and far between....

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