The Center provides multidisciplinary, coordinated and comprehensive care from the initial assessment to transition to adulthood.  We work closely with the family and specialists to provide the best health outcomes and quality of life for every patient and family.

During the initial visit, our core team and the family will collaborate on developing a care plan that addresses diagnosis, available treatment, and appropriate preventive care management addressing nutrition, respiratory, orthopedics, behavior and mental health, and social needs.  Family-directed goals and shared plan of care with collaborating specialty services will be emphasized.  As needed, we will coordinate and communicate referrals with appropriate members of the extended multidisciplinary team of specialists which may include a: pulmonologist, physical therapist, occupational therapist, speech therapist, dietitian, neuropsychologist, neuro-urologist or neuro-ophthalmologist. Over 27 areas of specialized care related to leukodystrophies are available at OCH.

Subsequent visits will focus on health maintenance of the child, including growth and nutrition, education and social structured assessment, and discussion of multidisciplinary care needs, with additional referrals as needed.  We anticipate at least twice yearly visits.

The Center is fully committed to ongoing accreditation, education and training.  Specifically, the LCN Center at OCH will focus on three primary areas of education:

  • Patient and family education – through handouts, the center’s web page, referrals to support groups and resources
  • Professional education – through Grand Rounds, rotation for residents and medical students
  • Community outreach – through events, community talks and discussions as well as the LCN face-to-face meetings, and conference calls.