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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Primary lateral sclerosis


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News & Events


ORDR Co-Sponsored Conferences

  • The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015 - Wednesday, June 10, 2015
    Location: NIH Natcher Conference Center, Bethesda, MD
    Description: The findings and recommendations resulting from the Workshop will provide guidance to the extramural community as well as to NINR and other Institutes, Offices (e.g., ORDR), and agencies in developing strategies for advancing the science of palliative care and caregiving in rare disease and research programs. It is anticipated that a funding opportunity announcement will result from the Workshop.

  • 18th International Congress of the World Muscle Society , Tuesday, October 01, 2013 - Saturday, October 05, 2013
    Location: Asilomar Conference Grounds, Asilomar, California
    Description: The symposium will be in the traditional WMS format with 3 selected topics: Myometrix in Health and Disease, Immunity and Muscle Disease, Advances in Therapy for Neuromuscular Disorders, and contributions will also be welcome on new advances across the neuromuscular field. One day of the symposium will be dedicated to each of the selected areas. Invited keynote speakers will summarize the state of the art on the selected topics, covering clinical, molecular and other aspects. The sessions will comprise contributed oral papers and poster presentations with guided discussions

  • RDCRN 3rd Conference on Clinical Research for Rare Diseases, Tuesday, October 02, 2012
    Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
    Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.

  • Translational Neuromuscular Research, Diverse Diseases, Convergent Themes, Monday, September 19, 2011 - Wednesday, September 21, 2011
    Location: Beaver Hollow Conference Center, Java Center, NY
    Description: The infrastructure for this conference was developed by the MSG, whose investigators have worked for the past 10 years to secure extramural funding and to develop outcome measures for clinical research/experimental muscle and other neuromuscular diseases. The goal of this conference is to help identify commonalities across therapy development in neuromuscular disease to help ensure that lessons learned in any one disease are disseminated across the neuromuscular community.

See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.