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| Title: |
Filling The Void: New Frontiers in The Treatment of Mucopolysaccharidoses |
| Date: |
Tuesday, June 17, 2008 |
| Time: |
05:15 PM - 06:45 PM |
| Type: |
SYMP-APPETIZER  |
| Level: |
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| Track: |
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| Sponsor(s): |
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| Speaker(s): |
Bryce A. Heese; Kathleen Moreo |
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The mucopolysaccharidoses (MPS) are a group of rare conditions which are characterized by deficits in enzymes that are required to break down ubiquitous chemicals called glycosaminoglycans. The partially broken down glycosaminoglycans then can build up in the body's tissues, resulting in dysfunction and clinical abnormalities which include respiratory, cardiac, and neurologic dysfunction.
MPS are rare, but place an extreme burden on the health care system when they occur, largely because of the severity of the clinical disease that they produce. New treatments for many of the MPS, including Hunter Syndrome, are being researched and released, and offer a hope of improving the quality of life of patients with these conditions.
The ongoing role of the case manager in patients with MPS includes patient/family education, advocacy, transition of care, resource management to maximize available benefits, implementation and monitoring of community services, and ongoing patient evaluation. This symposium will review the MPS, their consequences, and treatments, and discuss the part that the case manager may play in the management of patients with these devastating diseases.
Objectives:
- Identify the rapidly evolving, intensifying role of the case manager in human and metabolic genetics.
- Review the epidemiology, diagnosis, and ongoing management of the mucopolysaccharidoses, (including that of Hunter Syndrome).
- Assess therapeutic methods for mucopolysaccharidoses, including intrathecal enzyme replacement therapy, and how case management can impact therapeutic interventions.
- Evaluate current and future methods of assessment for patients with the mucoploysaccharidoses, including neurodevelopmental testing.
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