28 Oct '17, 2pm

ICYMI: Emma is pediatric patient ambassador for aplastic anemia at the NIH! See what she does to encourage others:

ICYMI: Emma is pediatric patient ambassador for aplastic anemia at the NIH! See what she does to encourage others:

When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help. Within a few weeks there was a new patient and we were asked to visit with the family on site at NIH. The little boy, Isaiah, was struggling with the breathing treatments he needed and Emma was asked to encourage him. We visited with the family for hours. Emma and her younger sister played Legos with Isaiah and Emma provided tips for enduring the taste of the breathing treatments. This family began closely following Emma's story and we've kept in close contact ever since. The mom, Amand...

Full article: http://www.aamds.org/patient-chronicles/emma-1

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ICYMI: John's caregiver, his sister Isabella, h...

aamds.org 22 Oct '17, 2pm

In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks aft...