Due to improvements in medical care and advances in technology, children with heritable disorders are now reaching adulthood and giving birth to their own children. Unfortunately, the health care field has failed to grow with them and bridge their transition to adult health care, ultimately failing to deliver appropriate and necessary follow-up care. Addressing the health care needs of female patients prior to and during pregnancy is particularly crucial to prevent their offspring’s mental retardation.
Working regionally and intra-regionally the region will identify develop, and implement a regional transitioning model/plan thatincorporates the needs of those with heritable disorders recognizing the importance of continuity of care and a medical home during the transition from pediatric to adult health care and during pregnancy; and identify, network with, and educate patients with heritable disorders in the region to ensure current and accurate knowledge about regional genetic services to improve their quality of health and access to appropriate health care.
Membership
Susan Redmon, RN, CCM, CRRN, MPH, Chair
TBD, Co-chair
Goals and Objectives
Objective 1: Continue collaborating and information sharing intra- and inter-regionally, including with the NCC; and conduct assessments during Year 1 to understand regional needs and statuses.
Objective 2: Develop, disseminate, and evaluate a regional transitioning model during Years 2-3 and during Years 4-5 continue to implement, assess, and information share intra-regionally to evaluate best practices related to transitioning and seek to replicate those throughout the region.
Objective 3: Identify, network with, and educate children with heritable disorders by developing a regional contact list; offering metabolic camps, holding disorder specific annual meetings and/or family days, and educational seminars.
