Jan Lowery, University of Colorado, delivered her keynote presentation, "The Dream Stream," focused on access to cancer genetic services. Dr. Lowery's presentation was notable and timely as access to genetic services will be of key interest to MSGRC in the upcoming grant year. We also welcomed Dr. Nathan Slotnick, who was able to provide insight as a practicing Medical Geneticist on the future of medical genetics and what a needs assessment might target. Dr. David Flannery's presentation and open discussion on "NCC Today and in the Future" asked for feedback from attendees on how genetic services should be defined and the role of public health in genetic services. The survey from the NCC can be completed here. Attendees were also especially excited to hear from Joan Scott, Chief of the Genetic Services Branch, and Joe Bocchini, Chair of the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC). Al Romeo (OTIS), Sharon Romelczyk (Genetic Alliance), Gina Pola-Money (LEND), and Marci Sontag (NewSTEPs) also gave outstanding presentations.
In addition to the keynote and national speaker session, Parent Partners also hosted a panel that discussed their experiences with this project. Our special thanks to Brad Thompson, Dr. Cathy White, Karla Ahlbourn, and Susan Peterson for providing updates and personal insight on what has been one of MSGRC's most active and successful projects over the last two years.
All six workgroups (Newborn Screening, Telegenetics, Health Information Technology, Medical Home, Consumer Advocacy, Emergency Preparedness) also had very productive meetings. Work was done on many ongoing projects and planning for the next grant year was also conducted. Notable items included NBS timeliness and the addition of disorders to the Recommended Uniform Screening Panel (RUSP), discussion on the EP survey Results, Project Echo (a model that uses video teleconferencing for case-based training), NBS education for families, and Family History Tools. The Hemoglobinopathies and Metabolic Consortium also met again. State updates, long term follow-up, and care plans were some of the topics discussed during these meetings. The MSGRC Annual Meeting was productive for all and the work accomplished in Phoenix will be fundamental in next grant year's activities.
Kathy Hassell delivering the "State of the Region Address"