Shocking News: Listening to the Rare Disease Patient Can Improve Outcomes

“Innovation includes really focusing our collective efforts to strive toward understanding patients’ needs, including meaningful therapies and beyond.”

Too often companies focus simply on the scientific solution to patients needs. The issue is they define these needs by what is biologically occurring in their body- not by their experience living with the disease on a day to day level.

As Alexion was able to develop the first FDA approved therapy for NMOSD, it is reassuring to hear that they have not become comfortable in their role for this condition even after this initial success.

They have expressed their gratitude for the patients that have shared their perspectives with them, like Sumaira, and for all of those who have participated in their clinical trials.

You can read more about the Sumaira Foundation and Alexion’s work in NMOSD here.


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