The official designation of AADC Deficiency Awareness Day has enabled parents and caregivers, patient advocacy groups, legislators and scientific experts to raise awareness, share resources and work together to support patients and families impacted by the condition. Aromatic l-amino acid decarboxylase (AADC) deficiency is a life-limiting, rare genetic disorder that typically causes severe disability and suffering from the first months of life.
We are honored to stand with the AADC deficiency community for AADC Deficiency Awareness Day. We are inspired by this incredible community and committed to continuing our work to extend life’s moments for those impacted by AADC deficiency and their loved ones.
Below, learn about the AADC deficiency advocacy organizations around the globe joining in to raise awareness of this rare condition impacting children, and visit their websites to learn more about how they are commemorating the day:
AADC Family Network:
AADC Family Network connects families with loved ones who have AADC deficiency and shares resources and support. They also fund research efforts with the goal of ultimately finding a cure for AADC deficiency and ensuring access to treatments for those living with the disease. The AADC Family Network funded both the first in vivo model to better understand the disease and to find new treatments as well as the first database focused on collecting information on signs and symptoms as it relates to severity of illness.
Teach Rare began as an organization by uniting a small community with the common goal to help children succeed and develop – while also helping and guiding parents who care for their children with rare diseases. They have since joined forces with rare/undiagnosed diseases and special needs communities. Their mission is to provide parents a framework at home, share role model teaching and learning strategies, connect parents with educational resources and teach institutions and groups for a larger reach.
Lil’ Brave One:
Lil’ Brave One in Serbian, Hrabriša was founded in December 2016 to provide support to the families with children suffering from neurotransmitter diseases, dopa-responsive dystonia and other neurometabolic disorders. The goal is for families to have support for adequate diagnostics and adequate treatment in the Republic of Serbia and abroad.
We are proud to support this incredible initiative and to continue our work to bring a treatment to patients. Learn more about how we celebrated AADC Deficiency Awareness Day for its inaugural year, 2020, and again in 2021.