Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.
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Lisa Mingo
FA Parent | CPA, CPHR
Lisa Mingo is the mother of a 16-year-old son with FA and has been part of the FA community since his diagnosis at five months old. She served on the FCF Board of Directors from 2018-2025, including as board president for the last two years. Lisa is passionate about connecting with FA families and encouraging their involvement in the community. She is dedicated to discussing ways in which families can get involved and support each other through the challenges of living with FA.
As a Canadian CPA (Chartered Professional Accountant) and CPHR (Chartered Professional of Human Resources), Lisa has experience working across a variety of industries in the Finance, HR, IT and Project Management spaces. Presently, she owns and operates a small architectural practice with her husband. Lisa is looking forward to her continued involvement in progressing FA research as an advocate and fundraiser. She and her family have held community-based fundraisers in Vancouver since 2011.
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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.