Unstuck: What to do when Pompe care falls short
Episodes
Calling in backup when Pompe care falls short
Heather Shorten shares practical tips for addressing disappointing medical care.
Watch VideoBalancing expertise with lived experience in Pompe care
Karen Kacures explains how she balances respect for both doctors' expertise and her own experience.
Watch VideoLooking for success beyond lab results in Pompe care
Haley Hayes shares what health benchmarks have felt underrated in her care.
Watch VideoNavigating difficult conversations with your Pompe doctors
Heather Shorten shares how to approach emotionally charged topics with doctors.
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