On Wednesday, April 21, 2021 from 12-12:30 p.m EST MPHI’s Center for Strategic Health Partnerships and the Midwest Genetics Network will host the #RaRETweetChat which takes place during the RaRE Disease Community Convening Conference.

The key partners for the chat are Dr. Susan Berry of the RaRE Project of the University of Minnesota and Jennifer Canvasser of the Necrotizing Enterocolitis Society. Dr. Berry is one of the founding members of the Midwest Genetics Network and is the co-director of the network. She is a clinical geneticist with a national reputation in the newborn screening community and rare disease community. Jennifer Canvasser is a Patient-Centered Outcomes Research Institute Ambassador and the founder of the Necrotizing Enterocolitis Society.

Other partners for the #RaRETweetChat includes the Patient-Centered Outcomes Research Institute and the National Organization for Rare Disorders.

The goals of the #RaRETweetChat are to:

  • Engage those who work in rare disease research, patient-centered outcomes research or with the patients and families facing rare diseases, as well as patients and families themselves, in dialogue surrounding rare disease research and the Rare Disease and Research Engagement Project.
  • Engage RaRE Community Convening participants and provide them the opportunity to digitally connect with others while discussing key topics surrounding the Rare Disease and Research Engagement Project.

To participate in or engage with the #RaRETweetChat follow the hashtag #RaRETweetChat on Wednesday, April 21, from 12-12:30 p.m. Questions will be shared from the Midwest Genetics Network twitter account.