“I think it takes a lot of strength to get through a change, it can be really uncertain and really scary but when you get to the other side and you look back there is a sense of accomplishment there” –Jillian.

Meet Jillian, a rare disease advocate living with cystic fibrosis, who understands the impact that living with a rare or chronic disease can have while moving through the transitional periods of your life.


Visit the #RAREis transitions section of our website for more resources.


Jillian Goodwin

Living with Cystic Fibrosis

Diagnosed with cystic fibrosis (CF) at three months old, Jillian Goodwin is a writer, public speaker and patient advocate for the CF and rare disease communities. She is committed to raising awareness and funds for CF so that everyone affected by this disease has the opportunity to live a happy, healthy life. She has been an active volunteer with the Cystic Fibrosis Foundation – Virginia Chapter since 2011 and currently sits on its Young Professionals Advisory Board. As an adult living with a rare disease, she is passionate about connecting with other rare individuals and sharing her story on her Facebook page, High Heels & Hospital Bills.

In addition to her volunteer efforts within the medical community, Jillian is a member of the Junior League of Norfolk-Virginia Beach (JLNVB), an organization whose mission is to promote volunteerism and develop leadership in women, while creating a lasting impact on the local community. She joined JLNVB in 2015 and is currently serving as Communications Vice President on its Board of Directors.

Professionally, Jillian works as a director of marketing and communications for a regional economic development office. She earned her Bachelor of Science in Communications from Old Dominion University, as well as an Associates of Science in Graphic Design from Tidewater Community College. Outside of work and volunteering, Jillian is an avid bargain/thrift store shopper, dog mom to two mini dachshunds, a fan of all things country music, and a self-proclaimed amateur chef.

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