In partnership with the Children’s Hospital of Wisconsin and the Genomic Sciences and Precision Medicine Center (GSPMC) at Medical College of Wisconsin (MCW) and sponsored by Orchard Therapeutics, Rare Storytellers Presents: Women and Rare Disease!
More than 7,000 rare diseases collectively impact over 350,000,000 people worldwide. Sharing songs and stories unite a strong voice for all those living with life-limiting and life-threatening rare diseases that have no treatments or cures.
Thursday, December 9
12:00 – 2:00pm CT
This event is free and open to the public. Register Here!
Hear from Keynote Speaker and Rare Storytellers
Belle is currently employed by the Cognitive Neuroscience Research Program at Medical College of Wisconsin. Belle was diagnosed with Marfan Syndrome at age two, and re-diagnosed with Loeys-Dietz Syndrome at age seven.
Claire was born with Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF), underdeveloped lungs, a hole in her heart, and a cleft lip and palate. Doctors said she wouldn’t survive. Nineteen years later, she is still here.
Featuring Music From…
Harmony 4 Hope Musical Ambassador
Singer songwriter and Rare Disease Advocate!
And Insights From Experts!
Pediatric Genetic Counselor
Stephanie has a master’s degree in genetic counseling from Case Western Reserve University in Cleveland, Ohio and has been practicing for 3.5 years. As a genetic counselor, her role is to provide support, resources, and education for patients with rare genetic conditions and their families and to help them navigate through the rare disease journey.
Angela Mathison, PhD
Angela is the Director of Research & Development at the Genomic Sciences & Precision Medicine Center (GSPMC). Angela is also an Assistant Professor in the Department of Surgery | Division of Research.
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Sponsor an Upcoming Event.
One by one Rare Storytellers is putting patients and advocates on the mic to educate current and future physicians, researchers and allied healthcare professionals on the 7,000 rare diseases collectively impacting 350,000,000 worldwide.