Marfans Awareness is a community-driven effort to share reliable information and raise funds for people living with Marfan syndrome.
Marfans Awareness is a grassroots initiative working toward becoming a registered nonprofit organization dedicated to supporting people living with Marfan syndrome. We're not yet formally incorporated or IRS tax-exempt, so donations made today aren't tax-deductible — but every gift, made through our GoFundMe campaign, goes toward that goal and toward supporting the Marfan community right now.
For clinical care, research, and official programs, we encourage everyone to also connect with established organizations doing this work at a larger scale, such as The Marfan Foundation.
Every message starts with the lived experience of patients and families, not assumptions about what they need.
Educational content is checked against current, publicly available clinical guidance before it's shared.
We're upfront about where we are: a grassroots initiative working toward nonprofit status, with donations currently going through GoFundMe rather than a tax-exempt organization.
Whether you're a patient, caregiver, clinician, or supporter, there's a place for you here.