Free sialic acid storage disease

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Free sialic acid storage disease

Free sialic acid storage disease (free SASD) is a group of lysosomal storage diseases characterized by a spectrum of clinical manifestations including neurological and developmental disorders with severity ranging from the milder phenotype Salla disease (SD) to the most severe phenotype infantile free sialic acid storage disease (ISSD).

Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.

Reference: Access aggregated data from Orphanet at Orphadata.

Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.

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Free sialic acid storage disease?

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Advocacy Organizations

A Star for Ben Foundation, INC DBA STAR FOUNDATION

Salla Treatment and Research Stands with the unwavering belief that no disease is too rare for science and viable treatment options. STAR Foundation looks to create family networks, educational resources, and meaningful science into the ultra-orphan rare disease called Salla.

A Star for Ben Foundation, INC DBA STAR FOUNDATION

Salla Treatment and Research Stands with the unwavering belief that no disease is too rare for science and viable treatment options. STAR Foundation looks to create family networks, educational resources, and meaningful science into the ultra-orphan rare disease called Salla.

Lysosomal Storage Disorders Support Society

LSDSS endeavors to transform the life of children affected by rare Lysosomal Storage Disorders. Our mission is to increase awareness about the prevention of such disorders in future offspring as well as counsel the affected patients and families on how to cope with existing conditions, ensuring no patient or family living with an LSD ever feels alone.

Canadian Society for Mucopolysaccharide & Related Diseases Inc.

The Canadian Society for Mucopolysaccharide and Related Diseases Inc. (The Canadian MPS Society), founded in 1984, serves all Canadians affected by MPS and related diseases through support, education, advocacy and by advancing research.

Mississippi Metabolics Foundation

Mississippi Metabolics Foundation (MMF) was founded to raise awareness, educate, and provide support to those living or caring for someone with genetic metabolic disorders/inborn errors of metabolism (IEM).

Clinical Trials

For a list of clinical trials in this disease area, please click here.