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The Huntington’s Disease Center of Excellence at Miami
Huntington’s Disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It causes deterioration of one’s physical and mental abilities. Symptoms usually appear between ages 30 to 50 and worsen over a 10 to 25-year period. Today there are 30,000 symptomatic Americans and more than 200,000 individuals at risk for inheriting the disease.
The HDSA Center of Excellence Clinic at Miami’s mission is to provide superior multidisciplinary patient care to patients and families affected by Huntington disease. It received its HDSA re-designation as a Center of Excellence on February 24th 2020. It provides the opportunity for HD patients to participate in clinical trials, access to educational materials, and information on resources available within the local community and HD community at large. The Clinic serves as a tertiary referral center for patients suffering from Huntington disease in the South Florida community as well as being the premier referral center for HD patients from abroad, particularly Latin America and the Caribbean. The clinic also provides hands-on experience to fellows and residents in caring for those affected with HD.
The HD multidisciplinary Clinic has been under the direction of Dr. Carlos Singer since 2002. It is now co-directed by Dr. Henry Moore. With the addition of Dr. Moore, the clinic has doubled its capacity. This has allowed for sooner appointments and quicker follow ups. Patients with Huntington’s disease can now be followed at our clinics in Boca Raton (Palm Beach County), Plantation (West Broward County) , Fort Lauderdale (East Broward County), Coral Gables (Miami-Dade County), and Kendall (South Miami-Dade County). This is in addition to our clinics at the University of Miami and Miami Veterans Administration Health in downtown Miami. The multidisciplinary clinic also includes an HD experienced Genetic Counselor along with our center social worker facilitating social services and addressing major areas of concern including placement in ALF’s, Home Health referrals, and prescription assistance.
In response to the Coronavirus Pandemic, the COE Team immediately restructured the HD Clinic to move to Telemedicine services for our HD patients and families. We are fortunate to have the Neuropsychology Division and its clinic operating on the same floor as the HDSA COE clinic and by mid-March 2020; we were referring our patients to virtual outpatient services including Neuropsychology, Physical Therapy, Occupational Therapy, Speech Language Pathology and Dietician referrals. Based on HD patient and family needs, we created a fully operational cross disciplinary Hybrid HD Clinic providing patients with the option of an in person or virtual visit. We are proud to be one of the 50 HDSA Centers of Excellence across the United States. To locate an HDSA Center of Excellence in Your Area, visit HDSA.org. or call (800) 345-HDSA
The HDSA COE Clinic is located at the outpatient clinic building, Professional Arts Center (PAC), 1150 NW 14th Street, Suite 609, Miami, Florida 33136, operating within the outpatient clinic services of the Department of Neurology. To make an appointment with our Movement Disorder Specialists, call: (305) 243-3100
Miami HDSA COE Clinic:1150 NW 14 Street, Suite 609 Miami, FL 33136
Boca Raton HDSA COE Clinic: 3848 FAU Blvd Suite 305 Boca Raton, FL 33431
For HD resources, Support Groups and to locate an HDSA Center of Excellence near you, visit www.HDSA.org.