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Leuven · LeuvenPeople affected by rare diseases like aromatic L-amino acid decarboxylase (AADC) deficiency require more than just medical support: These patients and their caregivers need a holistic approach that also addresses several unmet needs, such as providing social and financial assistance. That’s according to a new study, “Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review…Read Article
Study highlights need for holistic support for rare disease patients
Mississippi · MississippiRylae-Ann, my daughter, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, an ultra-rare neurotransmitter disorder that disrupts the production of dopamine and serotonin. Before she received life-changing gene therapy at 18 months old, even basic developmental milestones felt like mountains. Since gene therapy, she’s made amazing strides in walking, talking, learning, and living a life full of promise. But even now, my wife, Ju…Read Article
