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Learn About Zellweger Syndrome

What is the definition of Zellweger Syndrome?
Zellweger syndrome is the most severe form of a spectrum of conditions called Zellweger spectrum. The signs and symptoms of Zellweger syndrome typically appear during the newborn period and may include poor muscle tone (hypotonia), poor feeding, seizures, hearing loss, vision loss, distinctive facial features, and skeletal abnormalities. Affected children also develop life-threatening problems in other organs and tissues, such as the liver, heart, and kidneys. Zellweger syndrome is caused by genetic changes in any one of at least 12 genes; genetic changes in the PEX1 gene are the most common cause. It is inherited in an autosomal recessive manner.
What are the alternative names for Zellweger Syndrome?
  • Zellweger syndrome
  • CHR
  • Cerebrohepatorenal syndrome
  • ZS
  • ZWS
  • Zellweger leukodystrophy
Who are the top Zellweger Syndrome Local Doctors?
Elite in Zellweger Syndrome
Medical Genetics | Pediatrics
Elite in Zellweger Syndrome
Medical Genetics | Pediatrics
601 N Caroline St, 
Baltimore, MD 
Languages Spoken:
English

Nancy Braverman is a Medical Genetics specialist and a Pediatrics provider in Baltimore, Maryland. Dr. Braverman is rated as an Elite provider by MediFind in the treatment of Zellweger Syndrome. Her top areas of expertise are Zellweger Syndrome, Chondrodysplasia Punctata Syndrome, X-Linked Chondrodysplasia Punctata 2, and Acromesomelic Dysplasia.

Elite in Zellweger Syndrome
Elite in Zellweger Syndrome
Amsterdam, NH, NL 

Hans Waterham practices in Amsterdam, Netherlands. Mr. Waterham is rated as an Elite expert by MediFind in the treatment of Zellweger Syndrome. His top areas of expertise are Zellweger Syndrome, Refsum Disease, X-Linked Chondrodysplasia Punctata 2, and Chondrodysplasia Punctata Syndrome.

 
 
 
 
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Elite in Zellweger Syndrome
Elite in Zellweger Syndrome
Amsterdam, NH, NL 

Ronald Wanders practices in Amsterdam, Netherlands. Mr. Wanders is rated as an Elite expert by MediFind in the treatment of Zellweger Syndrome. His top areas of expertise are Zellweger Syndrome, Refsum Disease, Barth Syndrome, and Infantile Refsum Disease.

What are the latest Zellweger Syndrome Clinical Trials?
Longitudinal Prospective Natural History Study of Retinopathy in Zellweger Spectrum Disorder

Summary: The goal of this observational study is to define the course of the retinal degeneration in a ZSD patient cohort. The objective of this study is to gather information so the investigators can: 1. define the course of the retinal degeneration in a ZSD patient cohort with retinal degeneration 2. define what tests best monitor the progression of the retinal degeneration 3. generate prognostic informa...

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MT2013-31: Allogeneic Hematopoietic Cell Transplantation for Inherited Metabolic Disorders and Severe Osteopetrosis Following Conditioning With Busulfan (Therapeutic Drug Monitoring), Fludarabine +/- ATG

Summary: This single-institution, phase II study is designed to test the ability to achieve donor hematopoietic engraftment while maintaining low rates of transplant-related mortality (TRM) using busulfan- and fludarabine-based conditioning regimens with busulfan therapeutic drug monitoring (TDM) for patients with various inherited metabolic disorders (IMD) and severe osteopetrosis (OP).

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Published Date: May 02, 2022
Published By: Genetic and Rare Diseases Informnation Center