Patient representation is core to ERNICA. The involvement of patient representatives in network activities is hugely valued. They are experts by experience. Below are the names of the current patient representatives involved in the network.
Patient organisation |
Representative |
Representing |
Esophageal Atresia |
||
Esophageal Atresia |
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JoAnne Fruithof |
Esophageal Atresia |
|
Congenital diaphragmatic hernia |
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Hirschsprung Disease |
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Annette Lemli |
Hirschsprung Disease |
|
Hirschsprung Disease |
They may be involved with the following:
At network board Level:
Disease-specific level: