Virtual Rare Disease Day Event

Many colorful portraits of a diverse group of peopleThe tenth annual University of Minnesota Rare Disease Day was hosted on Friday, Feb. 25, 2022. The virtual event drew an attendance of 200 people and was co-sponsored by the Center for Orphan Drug Research and the Stem Cell Institute. The theme of this year's event was the transition of care. 

The program, "Successes & Challenges in Transition of Care for Rare Disorders," featured three keynote speakers and a panel discussion. We were honored to have University of Minnesota president, Joan T.A. Gabel, provide recorded remarks for the program as well. 

Even though the event was hosted virtually again, we still had great community engagement with 21 local/regional patient advocacy groups in attendance and 24 research posters presented. Thank you to everyone who attended and to our event sponsors who made it possible!

Keynotes

  • Alex Boucher, MD, FAAP, Assistant Professor, Department of Pediatrics, University of Minnesota Medical School - representing the Sickle Cell Disease provider community

  • Samuel Goldfarb, MD, Professor, Department of Pediatrics, University of Minnesota Medical School - representing the Cystic Fibrosis Disease provider community

  • Linda Krach, MD, Rehabilitation Medicine Physician, Gillette Children's Specialty Healthcare - representing the Spina Bifida provider community

Panel Discussion

  • Moderated by Paul Orchard, MD, professor, Department of Pediatrics, University of Minnesota Medical School

  • Rebecca Nelson, LICSW, Transition Social Worker, Gillette Children's Specialty Healthcare

  • Dana Hoehn, PSYD, LD, Psychologist, Gillette Children's Specialty Healthcare

  • Carlye Tomczyk, APRN, CNP, Nurse Practitioner, University of Minnesota Masonic Children's Hospital

  • Nadine Haddad, RN, Director of Clinical Operations, University of Minnesota Physicians

  • Isaac Kawonise, Patient, Representing the Sickle Cell Disease community

Visit the UMN Rare Disease Day website to learn more.