Welcome to the Center for Rare Neurological Diseases

Families who have a loved one with a rare disease often feel hopeless. During most of their interactions with the medical community, they spend more time teaching physicians about the rare disease than they do receiving helpful advice. Often well-meaning doctors make grim prognoses that are not supported by any data or experience, and families are left without hope.

We are here to help.

Most affected individuals have never met a specialist in their disorder, and care is inconsistent. Quality of life is often extremely poor, and over 1/3 of early childhood mortality is due to a rare disease. At the Center for Rare Neurological Diseases, or CRND, we address this gap in care by combining our unusual expertise with a remarkable multidisciplinary facility.

The founder of CRND has over a decade of experience both diagnosing and caring for individuals with rare diseases, and at the Center we understand the unique needs of these individuals. The structure of the mainstream medical system does not allow for an adequate assessment of an individual’s abilities, disabilities, and needs. Care is typically fragmented, and most importantly, families leave clinics and hospitals feeling as if they have no “medical home”.

At CRND, we provide the medical home for you and your family. Our first visit ranges from 2-3 hours, most of which time is spent with one of our rare disease expert physicians. During this time, we will assess your needs, with respect to:

We will discuss both active research opportunities and prospects for future research, at our center and around the world

If your family member has an undiagnosed disease that you suspect is a rare neurological disease, we will need to review your records prior to consultation. Please fill out and the attached medical release form, and submit this to any facilities with medical records relevant to the diagnosis. We prefer to receive these electronically.

Click Here to Download Medical Release Form.

We recognize that no individual or group of experts could offer collective expertise in the more than 7,000 rare diseases. However, we will gladly hear your story and offer what help we can. We have a list of the disorders we currently care for, and we are eager to help if we can. If we feel we have little to offer, we will tell you this before you commit to a visit. If we feel we can help in some way, then we will invite you for the initial 2-3 hour consultation, after which we will be happy to serve as your “medical home”. With your permission, after your visit we will discuss our evaluation and recommendations with your local physicians, and do our best to work as a team with these general practitioners and subspecialists.