Tag: Patient Support

Recovering anti-NMDAR patient shares advice via voice memo

Shawn Kregan contacted the Autoimmune Encephalitis Alliance in August of 2016, and we have been connecting regularly ever since. He has put together a voice memo to aid and inspire those who struggle with AE.  Shawn wants everyone to know that sharing experiences gives others confidence and strength, so don’t be afraid to tell people …

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Wall Street Journal reports sharing group health stories allows for insight for doctors

Rachel Emma Silverman from the Wall Street Journal reports that health care providers who organize patient discussion groups are finding that vast amounts of information are to be gained. They are asking patients with similar conditions to share stories. The idea behind these “experience groups” is to elicit insights about illnesses, with the goal of understanding and …

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“Miracle Flights” provides free medical flights to specialized care and second opinions

“Miracle Flights for Kids” is a Las Vegas based non-profit that provides free medical flight to kids and their families to see specialized caregivers and to seek second opinions. Miracle Flights contacted AEA last year and asked if we would help spread the word about their work. Their mission is “to improve access to health care by …

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