Jimmy Fearon

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research advocacy family support care fundraising epidermolysis bullosa non-profit organizations eb simplex junctional eb dystrophic eb kindler eb genetic condition skin condition blistering wound care pain management support services financial support psychological support peer support healthcare professionals genetic counselling research funding medical alert card respite care hospitalisation grant life-limiting conditions clinical trials community engagement charity awareness campaigns donations events caregiving home adaptations personalised booklets volunteering loss & bereavement support ongoing research quality of life skin integrity genetic testing genetic inheritance protein function skin treatment patient support health education skin fragility rare disease symptom management community involvement active challenges fund-raising nonprofit organization management health care health wellness & fitness hospital & health care philanthropy