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Genetic and Rare Diseases Information Center (GARD)

Amyotrophic lateral sclerosis type 9

Other Names for this Disease
  • Amyotrophic lateral sclerosis 9
  • ALS9
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

News & Events


ORDR Co-Sponsored Conferences

  • 2016 Rare Disease Day at NIH, Monday, February 29, 2016
    Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
    Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.

  • ALS Clinical Trials Guidelines, February 2016
    Location: Warrenton, VA
    Description: Specific Aims: 1. To finalize the formation of an Organizing Committee and Advisory Board of international ALS physician and physician-scientist volunteers to develop and organize an international meeting that will update the present ALS clinical trial guidelines; 2. To hold an international conference o review the issues and current status of clinical trials; 3. To discuss and develop guidelines for ALS RCTs; and 4.To publish the guidelines in major neurology journals and promote implementation of these guidelines into future ALS trials.

  • 2015 Muscle: Excitation/Contraction Coupling Gordon Research Conference & Gordon Research Seminar, Saturday, May 30, 2015 - Friday, June 05, 2015
    Location: Sunday River, Newry, ME
    Description: The 2015 Gordon Research Conference (GRC) and Gordon Research Seminar (GRS) on Muscle: Excitation/Contraction Coupling (ECC) will once again bring together established leaders and new investigators from around the globe to present their latest unpublished research, as well as engage in meaningful scientific and social interactions. This is the premier meeting of basic and translational scientists interested in the molecular mechanisms of ECC and how defects in this process lead to debilitating and life-threatening muscle disorders.

  • Drug Discovery in ALS: Opportunities and Challenges, Sunday, March 04, 2012 - Wednesday, March 07, 2012
    Location: Washington , D.C.
    Description: The goals of the workshop are: [1] To bring clinical and scientific leaders from academia and industry together to focus on drug discovery for ALS. [2] To enable discussion and new project ideas to evolve from the interaction of researchers with different expertise in ALS and related fields. [3] To bring young researchers at an early stage of their careers to a stimulating and educational forum enabling them to interact and learn from their peers. [4] To discuss three key areas that impact ALS Drug Discovery and related fields: A) Academic and Industry Partnerships, B) New Opportunities for Biomarker studies in ALS, and C) Clinical Trials Networks to enhance patient enrollment and standardization of trials between sites.

  • NIH ALS Conference: Clinical Research to Find the Pathogenesis and Cause of ALS, Wednesday, September 07, 2011 - Friday, September 09, 2011
    Location: Tarrytown House Estate and Conference Center, Tarrytown, NY
    Description: This conference is designed to stimulate the development of collaborative research projects between amyotrophic lateral sclerosis (ALS) physicians and basic scientists. It is expected that conference participants will develop a consensus regarding current research gaps and recommended next steps to enhance patient-oriented research in ALS. The previous “Tarrytown 1” conference, which was held in 2003, resulted in the formation of a new ALS research group that facilitated the biobanking of ALS biospecimens. It is expected that the 2011 conference will have similar tangible results.

  • Third Genome Dynamics in the Neurosciences Conference, Sunday, July 18, 2010 - Thursday, July 22, 2010
    Location: The Hilton Metropole, Brighton, England
    Description: The goal of this meeting was to integrate basic processes of DNA damage signaling and repair and clinical aspects of neurological and neurodegenerative disease. The program was designed to bring together leading scientists with primary interests in DNA damage signaling with those working in specific related neurodegenerative disease areas as a means for integrating these fields. It was anticipated that this would generate insights into how normal processes of genome maintenance in the brain contribute to the prevention of a wide range of diseases.

Other Names for this Disease
  • Amyotrophic lateral sclerosis 9
  • ALS9
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.