Amy Gietzen is a passionate patient advocate, public speaker, program developer, and
educator. Amy was diagnosed with Systemic Scleroderma at the age of 19. Several years later
she was also diagnosed with Interstitial Lung Disease and Cardiac Disease.
Amy has spent most of her adult life creating space for young adults to connect, learn, and find
support in the scleroderma community. In 2020 Amy was honored with the Volunteer of the
Year Award from the National Scleroderma Foundation, along with The Ernest J DuPonte
Award through her work with the Steffens Scleroderma Foundation where she developed a
training program for patient educators called “ The Art of Advocacy.”
Over the past 23 years of her disease journey, Amy has represented patients in over 12
different organizations, committees, and groups, allowing patients’ voices to be heard on
multiple fronts. She was a columnist for the online magazine Scleroderma News for over two
years, uplifting patients and their families living with rare diseases.
As a patient and advocate, Amy has traveled across the country speaking out about clinical
research, innovative treatments, and sustainability in healthcare. She has attended Capitol Hill
Day for the last 7 years and has cultivated a great relationship with her previous Congressman
Brian Higgins, who spoke during an open congressional meeting about her work for the State of
New York. She resides in Buffalo New York with her supportive family and her three furbabies.
In the future, Amy hopes to push the boundaries of modern healthcare to make space for all
diseases, especially rare ones.
