Kennedy Krieger Institute announced the opening of a new clinic for the treatment and research of Albright hereditary osteodystrophy (AHO), a rare genetic disorder affecting the bones, skin and hormone-producing tissues. Under the direction of Dr. Emily Germain-Lee, the clinic will provide expert care to children and adults with the disorder, as well as conduct research to expand knowledge of AHO and identify new treatment options. Dr. Germain-Lee currently follows more than 200 patients with AHO, making her one of the world's experts in this condition.
Dr. Germain-Lee will share her expertise tonight on ABC's Nightline, alongside three families with children affected by AHO. The segment is scheduled to air on Tuesday, December 28 at 11:35 p.m. EST/10:35 p.m. CST. The air date is subject to change, so check http://abcnews.go.com/Nightline/ and your local listings for more information.
AHO is estimated to occur in 1 in 15,000 to 1 in 20,000 individuals worldwide, when a key gene for normal hormonal activity is defective and critical hormones fail to function as a result. The condition is characterized by short stature, obesity, bony deposits under the skin, bone and tooth abnormalities, and sometimes other developmental problems such as cognitive delays, autism and obsessive-compulsive disorder. Typically, children diagnosed with AHO stop growing around ages 10 to 12 when their growth plates fuse prematurely.
Dr. Germain-Lee's research at Kennedy Krieger will focus on improving the overall health and quality of life for patients with AHO by developing new treatments. A major area of her investigation is whether the clinical symptoms associated with the disorder could improve with growth hormone treatment. Her preliminary findings are very promising, and she is working toward FDA approval for growth hormone treatment for AHO.
The Albright Clinic is housed in the Institute's new Outpatient Center. This fully-accessible facility enhances interdisciplinary care by bringing together medical services with physical, occupational, speech-language and aquatic therapies under one roof.
"Access to interdisciplinary expertise and state-of-the-art resources is critical to improving the quality of life for patients with AHO," said Dr. Germain-Lee, director of the new Albright Clinic at Kennedy Krieger. "Kennedy Krieger's unsurpassed commitment to patients with rare disorders and special needs will greatly benefit our ability to address the complex challenges of AHO."
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