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Getting support

PTC is here for you and your family

At PTC, our dedicated patient engagement team understands the value of direct conversation and engagement with members of the rare disease community, including the AADC deficiency community.

Allie Freitas


Patient Engagement Liaison, North America Gene Therapy

Allie began her career in rare disease at the National Organization for Rare Disorders (NORD). In her current role at PTC, Allie’s goal is to elevate the patient voice, listen to caregivers, and document the impact of rare disease on the entire family. This critical information is then incorporated into how we conduct our clinical trials, assist patients and caregivers, and collaborate on disease-awareness initiatives. Allie has spent the last decade supporting Paul Newman’s Serious Fun Camps because she believes that camp is the best medicine—for everyone.

Paula Orandash


Patient Engagement Liaison, North America Gene Therapy

For nearly 3 decades, Paula has served families and patients living with rare disease. She began her journey in patient services at the Muscular Dystrophy Association, where she worked for 26 years. In her current role for the AADC deficiency community, Paula is continually inspired by the families she engages with. And because passion never takes a vacation, Paula has also served for many years as the director of a summer camp for children with disabilities—which is probably why her favorite snack is s’mores.

Frank Quintieri


Patient Engagement Liaison, North America Gene Therapy

As a registered nurse, Frank has been advocating for patients and helping others in need for many years. In his current role, Frank finds it rewarding when a caregiver or patient is empowered through PTC’s educational efforts to better understand their illness and their options. By working closely with and listening to AADC deficiency families, Frank and his team learn more about what is most important to them so that their interests are represented throughout PTC’s development efforts.


The patient engagement team is here to support you and your family.

To get in touch with the team, please email or call +1 833-PTC-HOPE (+1 833-782-4673).


Additional support sources

There are a variety of websites and support groups that can help caregivers like you find information and resources. Here are some that might be right for you:

Here are some that might be right for you: