All New Rare Storytellers

Rare Storytellers, a division of Harmony 4 Hope, proudly announces the launch of our partnership with Children’s Hospital Wisconsin and the Genomic Sciences and Precision Medicine Center at Medical College of Wisconsin. Leveraging a virtual platform, we intend to expand our growing network of patient speakers, musical ambassadors and researchers and clinicians broadening our educational scope to reach both national and international audiences.

We Welcome Horizon Therapeutics to the Stage, Sponsoring the First of a Six Part Series.

Join Us to Learn More About Urea Cycle Disorders and Be an Instrument of Hope for Rare Disease.

Thursday, September 9, 3-5 PM CT.

REGISTER HERE

FEATURING

Robyn Deleon, Parent Advocate for Urea Cycle Disorder and Founder of Connecting Families, UCD Foundation

The Deleon’s journey living with a UCD has definitely been a struggle. In the beginning, thirty years ago, they were lost, alone and afraid. There was no one to talk to. They only had each other. Thanks to social media, they happened to stumble across another family living with a UCD and from that a UCD GROUP was created, which now has over 700 members. Robyn and her husband sensed a need in the UCD community that wasn’t being met and together they created Connecting Families UCD Foundation.

Emily Singh, Pediatric Genetic Counselor, Children’s Hospital Wisconsin, MCW

Emily is a pediatric genetic counselor at Children’s Wisconsin and Medical College of Wisconsin. She has a master’s degree in genetic counseling from the University of Michigan and has been practicing for seven years with a focus on newborn screening and metabolic conditions, including urea cycle disorders. As a genetic counselor, her role is especially focused on the needs of the family; she helps the individual and parents understand and adapt to having a diagnosis of a rare genetic condition by educating about DNA, inheritance, and genetic testing, as well as providing family support and resources to help make the rare disease journey easier to navigate.

Phil Chaikin, PharmD, MD, FCP Scientific Advisor to Harmony 4 Hope, Q & A Discussion Moderator

Dr. Chaikin is a Fellow of the American College of Clinical Pharmacology and is the author of over 70 manuscripts and abstracts. He is the 2013 recipient of the American College of Clinical Pharmacology Nathaniel Kwitt Distinguished Service Award. He is an Adjunct Professor in the Department of Pharmacy Practice and Administration at Rutgers University School of Pharmacy. He also holds an adjunct faculty position in the Department of Pharmaceutical Sciences at the University of Florida School of Pharmacy.

Trapper Schoepp, Rare Disease Musical Ambassador

As a Musical Ambassador for Harmony 4 Hope since 2015, Trapper Schoepp merges his storytelling, musicianship and decade long battle with chronic back pain to offer a voice of solace in the ongoing struggles faced by those suffering from rare diseases. Schoepp is honored to raise awareness and funds with Harmony 4 Hope to help combat rare diseases worldwide.

Synthesizing Stories, Songs and Science — A Rare Disease Virtual Event You Won’t Want to Miss.

Rare Storytellers is a Harmony 4 Hope Production. All Rights Reserved.