As the 118th U.S. Congress begins its work, the National Organization for Rare Disorders (NORD) is showcasing the importance of engaging in health policy and what rare disease patient advocates can do to make their voices heard. The organization is the leading patient advocacy organization dedicated to improving the…
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The national outcomes-based patient support organization Curant Health has joined rare360, a Rare Advocacy Movement (RAM) partnership program that seeks to connect, build up, and protect community-focused industry, academic, and advocacy stakeholders in rare disorders. “Being a partner with the Rare Advocacy Movement (RAM) and a registered…
Centogene and Premier Research are teaming up to promote patient identification and enrollment in rare disease clinical trials, with the ultimate goal to increase the chances the trials will succeed. The effort aims to accelerate treatment solutions for the 350 million rare disease patients around the world, including…
Columnist Richard E. Poulin III celebrates the teachers who create an environment of inclusion for his daughter, who has AADC deficiency.
Check out AADC News’Â collection of Health Insights, where you can find a variety of information relevant for patients and caregivers.
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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