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Sure, based in Germany, we have ‘at home’ now for 2 weeks now and in fact my FAer daughter has been skipping school for 4 now.
We are using an Apple Watch/iPhone Xr and so far our experiences are really good. Including positiv feedback from our cardiologist: he really appreciated the Apple Health reports about activity tracking, heart rate report, as well as the EKGs the Apple Watch can generate.
Was super cool: over 400 attendees, 300 posters, and I was not the only FA-parent 🙂
Met old friends, made new friends.
Reata was there! Working on the next steps for Omaveloxolone.
New research, check out OSA.
Gen therapies for FA going strong,
My daughter uses an Apple Watch.
Tracks activity, heart rate, etc.
Feedback from her (pediatric) cardiologist also has been very positive.
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