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Amy Gietzen was born and raised in Buffalo, New York. Amy is both a scleroderma patient and a Patient Advocate, whose mission includes raising awareness of Scleroderma on many levels. Amy’s diagnosis came at the early age of just 19 years old. Her journey followed many twists and turns. Realizing her needs as well as young adults living with scleroderma might be different, she started to advocate for young adults and travel to various colleges and hospitals, support groups, and conferences to speak about her journey and educate clinicians. She is the creator and facilitator of a virtual young adult support group called SYNC which supports young adult patients nationally and internationally. Amy continues her outreach through her work with SPIN (Scleroderma Patient-Centered Intervention Network) where she sits on various patient advisory boards. Amy also works closely with several drug companies to raise awareness for not only scleroderma, but Interstitial lung disease, (ILD) Interstitial pulmonary fibrosis (IPF), and heart Issues concerning scleroderma patients. In 2020 Amy was a recipient of the National Volunteer of the Year award from the National Scleroderma Foundation and The Ernst J DuPont Award from The Steffens Foundation. In 2021 she became a columnist for the online rare disease magazine called Scleroderma news, her column is entitled Staying Alive with Scleroderma. In her spare time, she loves to paint, and quilt.

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