Welcome to the Neurodevelopment in Rare Disorders Website
The Program for the Study of Neurodevelopment in Rare Disorders (NDRD) is committed to helping children with rare, inherited neurological conditions and their families through evaluation, education, research and intervention. We offer a variety of services including educational interventions, medication management, therapy, and equipment recommendations. Our primary goal is to improve the quality of life of children with rare disorders and help them develop to their full potential.
The menu on the left has links to more detailed information about our activities. Please feel free to contact us if you have any questions.
Current NDRD Announcements
We would like to thank the Legacy of Angels Foundation for their generous donation that supports Krabbe research, treatment development, and clinical services to families. Without their support we would be unable to support some of the the unique aspects of our program. We take the time necessary to address complex care questions and provide follow up of our recommendations through our virtual medical home. A typical evaluation spans 1-2 days and often includes 2-3 hours of face-to-face time with Dr. Escolar. We do not consider the visit complete when the family goes home. We continue to support them to obtain medications, local services and insurance approvals. This additional time is not covered by insurance and are only available through donations like those of the Legacy of Angels Foundation. Without this help we would not be able to achieve our goal of improving the quality of life for children with rare disorders and help them develop to their full potential.
The fourth annual meeting of the Krabbe Translation Research Network was held March 10–12th 2014, Ft. Lauderdale, FL
The Krabbe Translation Research Network (KTRN) is a consortium of scientists and clinicians who are dedicated to accelerating the translation of research discoveries to clinical therapies. To achieve this goal, members work together, combining knowledge from clinical experience and basic science to develop unique studies.
Many thanks to the Rifton Company for their generous donations to the NDRD clinic
Thanks to Rifton's generosity, we can now demonstrate the use of different pieces of adaptive equipment to families.
Families will have the opportunity to try out equipment during clinic visits and use these assistive devices during inpatient treatment, which enables more rapid progress in rehabilitation therapy and better outcomes.
Rifton’s customer support provides personal service. If you would like more information please visit their Rifton website: www.rifton.com
NDRD Research Studies
Below are the studies that are currently open and enrolling participants. Please e-mail Jodi Martin or call 412-692-6351 if you have any questions or would like to participate in a study.