In a new feature, each week we will spotlight an amazing patient or caregiver who is part of the Rare Patient Voice community.
“Hi I’m Madison! At birth I was diagnosed with a rare disease called Turner Syndrome, as well as Aortic Stenosis, Mitral Valve Regurgitation and Pulmonary Hypertension. When I was 4 I went into congestive heart failure. At the age of 22 I am going through my third open heart surgery.
Throughout my life, I have advocated for more research and funding for rare diseases, as well as accessible healthcare. I believe Rare Patient Voice gives patients and caregivers a voice so that we can better advocate and understand ourselves through research.”