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Meet The Team
Founder / Director
It took 300 medical appointments to get a correct diagnosis for Lisa and Tony's son Jake. He suffered from the ultra rare brain disease Aromatic Amino Acid Decarboxylase deficiency. Once they had a confrimed diagnosis their rare disease journey began ...
Julie joined the charity over six years ago. She has organised and participated in many fundraising events & driven rare disease awareness to ensure the charity continues to support AADCd children and their families through patient advocacy ...
Founder / Medical & Scientific Director
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