Watch the October 22, 2021 Facebook LIVE Broadcast of AADC Deficiency Awareness Day

In 2020, the AADC Family Network, in collaboration with PTC Therapeutics, MassBio and Boston Children’s Hospital, observed the first AADC Deficiency Awareness Day. AADC stands for aromatic L-amino decarboxylase – and AADC deficiency is a rare disease that affects the brain and causes developmental delays and movement disorders, among other debilitating symptoms.

Learn More About AADC Deficiency

Learn About AADCd Awareness Day 2020

Visit the LIVE Event Listing on Facebook

In 2021, the AADC Family Network expands this rare disease awareness initiative. AADC Deficiency Awareness Day, October 23rd, is observed this year on Friday, October 22nd.

With first of its kind legislation in California and New Jersey enabling the share of accurate and timely AADC rare disease information and inspiration, PTC Therapeutics is proud to join the AADC Family Network and additional supporting organizations – such as the California Life Sciences Association and BioNJ – in hosting virtual recognition activities on October 22nd. AADC Awareness Day 2020 culminated in a Facebook LIVE presentation with more than a million global impressions. In 2021, PTC supports the AADC Family Network and MassBio in a second LIVE virtual event, webcast from multiple locations in the United States.

The October 22, 2021 event featured:

  • Opening remarks from MassBio CEO Joe Boncore
  • Return hosts Kelly Heger (founder and director of the AADC Family Network) and Bob Coughlin (former CEO, MassBio and rare disease ”dadvocate”)
  • PTC Chief Development Officer Dr. Matthew Klein
  • Basic information and awareness about the disease, the gene therapy approach to potentially treating rare diseases, and the patient diagnostic journey
  • A surpise visit from Congressman Stephen Lynch (MA-8)

We invite you to like us on social media – or connect with the AADC Family Network on Facebook, to receive new and exciting information about this important event as it is released.

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