2025 Research Applications Now Open!
March 7, 2025Thursday, November 13, 2025
11:30 AM-1:30 PM
Sonesta Hotel, Wauwatosa, WI
On November 13, as part of The Mellowes Center’s Rare Diseases and Rare Cancers Symposium Rare Storytellers® will bring together two young adults who have lived with Rare Disease since childhood and recently navigated the move to adult care.
Register HERE – registration is required to attend.
Approximately 50–75% of all rare diseases affect children. As these children grow up, many face significant challenges when transitioning from pediatric to adult medical care—challenges that can result in gaps in treatment and support. Barriers include a shortage of specialized adult providers, limited access to reliable information and resources, differences in quality of care compared to pediatrics, inadequate insurance coverage for complex needs, and the added difficulty of young adults managing their own care. Beyond these systemic issues, the transition is often emotionally and logistically overwhelming for both patients and families.
Through their personal stories and the emotional power of music, attendees will gain insight into the real-world impact of transition challenges, have the opportunity to ask questions, and leave with a deeper understanding of how to better serve the rare disease patient community in adult healthcare settings.
In the spirit of synthesizing stories, songs and science to educate and bring awareness to the 7,000 Rare Diseases collectively impacting 350,000,000 people worldwide we warmly welcome to our stage, Patient Guests, Taylor Schalk, and Claire Bevec, Clinical Guest, Dr. Michael Muriello and H4H Musical Ambassador, Trapper Schoepp.
Michael Muriello, MD
Medical Guest & Associate Professor of Pediatrics at the Medical College of Wisconsin.
Specialist in Genetics whose practice locations include Children’s Wisconsin-Main Campus.
Taylor Schalk
Superior Mesenteric Artery Syndrome Patient and Rare Storyteller
Claire Bevec
ARPKD/CHF Patient and Rare Storyteller
Trapper Schoepp
H4H Musical Ambassador (with Daniel Wolff)
Steve Scaffidi
Moderator & Radio Host for 620WTMJ
Please join us for what will be a harmonious, inspiring and uplifting educational experience like none other in the Rare Disease realm.
Rare Storytellers® is a division of Harmony 4 Hope created for the purpose of educating on Rare Diseases through songs, stories and science. Rare Storytellers® is a rapidly growing network of patients, musicians and medical professionals currently representing over 30 rare diseases.