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Genetic and Rare Diseases Information Center (GARD)

Neuronal ceroid lipofuscinosis

News & Events


ORDR Co-Sponsored Conferences

  • 14th International NCL Congress: Supporting US Based Scientists, Wednesday, October 22, 2014 - Sunday, October 26, 2014
    Location: Córdoba, Argentina
    Description: <p>The specific objectives are to: provide a forum to present the latest NCL scientific, clinical and translational research advances; promote opportunities for student and junior investigators to present their research; maximize the opportunities for interactions between members of the NCL research community through promoting discussion at poster sessions and a lively social program; promote links between NCL researchers and those working in other more common disease that may share similar mechanisms; bring together NCL researchers and clinicians with the NCL parent organizations and affected families, promoting clear and effective communication between these groups; and promote up-to-date diagnoses of NCLs in low and middle income countries.</p>

  • Outcome Measures and Infrastructure for Phase III Studies in Batten Disease, JNCL, Saturday, September 22, 2012 - Monday, September 24, 2012
    Location: Hyatt Regency, Atlanta, GA
    Description: The main objective of the meeting is to bring together clinical research experts in JNCL to focus, for the first time, on establishing common ground for outcomes and infrastructure in support of Phase III Clinical Trials. Towards this end, it is anticipated that at the end of the meeting the participants will be able to identify potential clinical trial endpoints for Juvenile Neuronal Ceroid Lipofuscinosis (JNCL, CLN3 disease, Batten Disease); build upon the infrastructure for an International Patient Registry for JNCL and other NCL diseases, and provide opportunities for junior investigators pursuing research in JNCL to learn about and participate in the clinical research development process.

  • Gene Transfer and Rare Diseases Workshop, Thursday, September 13, 2012
    Location: Rockville Hilton, Rockville, Maryland
    Description: The NIH Office of Biotechnology Activities and Office of Rare Disease Research, NCATS, are co-sponsoring a workshop to discuss the advances in and challenges of gene transfer for rare diseases. There have been recent promising clinical successes in gene transfer protocols for rare diseases, such as retinal degeneration, hemophilia, and immune disorders. Investigators will discuss their results to date and opportunities and challenges for extending these successes to other similar rare diseases. The panel discussions will focus on strategies for maximizing opportunities for data sharing or platform development.

  • 13th International NCL Congress, Wednesday, March 28, 2012 - Saturday, March 31, 2012
    Location: London, England
    Description: The conference will focus on therapeutic approaches for NCLs for which the genes and mutations have been identified and how it relates to intracellular protein trafficking, neuropathology, critical analysis and use of animal and cellular models and how to optimize these resources for therapeutic strategies, use of proteomics and system biology in understanding normal function of NCL genes, and avenues for molecular therapy, particularly on drug, gene and stem-cell based therapies.

Other Names for this Disease
  • Batten disease
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