The National Organization for Rare Disorders (NORD) announced that its annual Rare Diseases & Orphan Products Breakthrough Summit centered on the theme “From Voices to Breakthroughs.” The event, held October 19-21 in Washington, D.C., highlighted how lived experiences fuel significant scientific and policy advancements. The event featured a…
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When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, we quickly learned that caregiving required us to wear many hats. My wife, Judy, and I stepped into the role of nurse, teacher, therapist, advocate, and researcher. Like many caregiving parents, we often felt…
The AADC Family Network will host its annual AADC Awareness Day event this Thursday, once again seeking to raise the profile of this ultra-rare genetic disease. The event, now in its sixth year, is held annually on Oct. 23 to raise awareness about aromatic L-amino acid decarboxylase (AADC)…
Aromatic l-amino acid decarboxylase (AADC) deficiency is a genetic and neurometabolic disease that affects the nervous system. Learn more about the disease here.
AADC deficiency can affect many aspects of a person’s life, including mobility, breathing, sleeping, and eating. Learn more here about different ways to manage the condition, adapt, and handle everyday tasks.
There is not yet a cure for AADC deficiency, but there are approved treatments that can help manage the condition, as well as experimental treatments in the pipeline. Learn more about treating the disease here.
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