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Experiencing Positive Health, as a Family, While Living With a Rare Complex Disease: Bringing Participatory Medicine Through Collaborative Decision Making Into the Real World

Experiencing Positive Health, as a Family, While Living With a Rare Complex Disease: Bringing Participatory Medicine Through Collaborative Decision Making Into the Real World

They included Orrin Devinsky (Panel Chair, who also was Silvana’s current treating physician) and Annapurna (Ann) Poduri, another physician in Silvana’s team who managed her as a teenager and was highly trusted by her family. The group acknowledged that a diverse panel of experts provided an opportunity for new insights to emerge to maximize Silvana’s health, while reassuring Ricardo and the family about the robustness of the recommendations.

Caridi Family, Annapurna Poduri, Orrin Devinsky, Miriam Tabacinic, Alejandro R Jadad

J Particip Med 2020;12(2):e17602