Akron Children’s opens leukodystrophy and rare neurological disease clinic
Akron Children’s has opened a leukodystrophy and rare neurologic disease clinic, aiming to make the rare neurologic disease diagnosis and treatment journey less intimidating and lonely for patients and their families.
The Leukodystrophy and Rare Neurologic Disease Clinic, located on the 4th floor of the hospital in the Neurodevelopmental Science Center, provides diagnosis and treatment of leukodystrophies and other progressive, neurogenetic diseases.
Leukodystrophies are a group of more than 50 neurological disorders. These disorders are inherited and affect the myelin, the protective covering on nerves, in the brain. Leukodystrophies are progressive and usually cause loss of neurological function in infants and children.
The Leukodystrophy and Rare Neurologic Disease Clinic is multidisciplinary and includes providers from neurology, complex care pediatrics, a genetic counselor and a nurse coordinator. Additional specialties will be added based on patient needs.
The clinic provides:
- Longer visits
- Care coordination
- Concierge services to families who often require scheduling multiple specialist visits
- Help navigating the search for clinical trials and research opportunities
Dr. Matt Ginsberg, clinic director and founder, pediatric neurologist and The James F. and Marguerite A. Pearson Endowed Chair in NeuroDevelopmental Sciences for Rare Diseases, sought to open the clinic to help patient families navigate an often isolating and scary diagnosis.
“Facing a rare disease can be intimidating and lonely. The Leukodystrophy and Rare Neurologic Disease Clinic aims to make it a little less scary and confusing,” said Dr. Ginsberg.
He continued that he has been studying rare neurologic diseases and wanted a clinic at Akron Children’s that could focus on these diseases.
“I was lucky enough to meet a patient with a leukodystrophy called Alexander disease. Her grandparents created an endowed chair at Akron Children’s with the hope of advancing care for patients like her, and that was the catalyst for crafting the program,” he added.
Dr. Ginsberg hopes the clinic will also be able to serve the expanding number of patients diagnosed with leukodystrophy by newborn screening and provide access to the newest therapies as they become available.
Clinic hours are 8:30-4:30 p.m., Monday through Friday. To schedule an appointment at the Leukodystrophy and Rare Neurologic Disease Clinic, call the NeuroDevelopmental Science Center at 330-543-8050.