Rare Care: Reducing Distress & Embracing Well-being

Reduce Emotional Distress: 5 strategies to well-being for the rare disease caregiver
Amanda Hull is from Suffolk in England. She and husband, Daniel, have three boys; Joe, Sebby and Walter. Sebby is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. Amanda has worked as an Educational Psychologist for the past 18 years, and Daniel is a farmer. They live on a farm and have an active lifestyle with all of them enjoying being outdoors and doing adventurous activities.
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About the TANGO2 Research Foundation:
Our mission is to lead the way in finding a cure for TANGO2 related disease. We will do this by helping to fund, coordinate and guide scientific research that leads to a better understanding of how TANGO2 mutations affect people at the most basic cellular and biochemical pathway levels.
For more information, go to: www.tango2research.org
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