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Resource Finder at Kennedy Krieger Institute
A free resource that provides access to information and support for individuals and families living with developmental disabilities.
Kennedy Krieger Institute • 801 North Broadway • Baltimore, Maryland 21205
About Our Program:
The Albright Clinic at the Kennedy Krieger Institute is dedicated to the management and treatment of patients with Albright hereditary osteodystrophy (AHO). We provide comprehensive medical evaluation, clinical care, and genetic testing. In addition to our expertise in Albright hereditary osteodystrophy, the vast resources available at the Kennedy Krieger Institute mean our patients' needs can be met in one location. It is our goal to help our patients gain a better understanding of their condition and access appropriate medical management to improve their overall health and quality of life.
We are conducting several clinical trials, including one involving growth hormone (GH) treatment in Albright hereditary osteodystrophy. We have found that GH deficiency is common in patients with pseudohypoparathyroidism type 1a, and we are investigating the effects of GH therapy on height, weight, and metabolic disturbances as well as overall health, well-being, and self-esteem in patients diagnosed with Albright hereditary osteodystrophy.
We are also investigating the cause of other clinical problems, including bone formation under the skin, skeletal and tooth abnormalities, and cognitive/behavioral issues. By combining scientific investigations in the laboratory with clinical research studies, we have the unique opportunity to translate scientific knowledge into therapeutic applications. Our goal is to find and develop new treatment methods in order to improve the overall health and quality of life of patients with Albright hereditary osteodystrophy.
Our interdisciplinary team includes experts in the following fields:
- Neurocognitive and neuropsychological testing
- Physical therapy
- Occupational therapy
- Speech and language therapy
- Behavioral psychology
- Genetic counseling
- Nutritional assessment and counseling
We also have resources available to help with school placement issues.
Our Treatment Approach:
We begin with a two- to three-hour initial visit, which includes an extensive history, physical examination, and endocrinology evaluation focused on the specific needs of each patient. Growth hormone and mutation testing can also be performed when necessary. Prior to the visit, we will arrange evaluations with one or more members of the treatment team.
There are often learning and behavioral difficulties associated with Albright hereditary osteodystrophy, and the Kennedy Krieger Institute is world-renowned in the testing, diagnosis, and treatment of these types of problems, with many clinicians and scientists who are leaders in this field. These evaluations can also be arranged when scheduling the initial visit.
At the completion of the initial visit, a comprehensive management and treatment plan is developed. We can provide patients' regular clinical care on an ongoing basis or help patients find the appropriate resources near their homes.
Parent Support and Advocacy:
A number of online groups meant to educate and support have been organized by families followed at the Albright Clinic. The Parent Support and Advocacy group is active in providing knowledge and fundraising for this condition. To learn more, please e-mail AHOSupportGroup@yahoogroups.com or AlbrightsSyndromeForum@yahoogroups.com.
In the News:
- ABC Washington, D.C. News Highlight
- ABC's Nightline: Mystery Diagnosis
- Kennedy Krieger Institute Opens First Clinic for Albright Hereditary Osteodystrophy; Dr. Emily Germain-Lee Brings New Expertise and Research to the Institute
For more information or to schedule an appointment, please call 443-923-9400, or toll-free at 888-554-2080.