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Genetic and Rare Diseases Information Center (GARD)

Holoprosencephaly ectrodactyly cleft lip palate

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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.

  • David W. Smith Workshop on Malformations and Morphogenesis, Friday, August 27, 2010 - Wednesday, September 01, 2010
    Location: Alderbrook Resort, Union, Washington
    Description: The goal of the Smith Workshop was to bring together a diverse group of clinicians and scientists to advance general understanding of human dysmorphogenesis as well as normal morphogenesis. To meet this goal, the descriptions of new syndromes, more detailed phenotypic characterization of already established syndromes, studies of the natural history of human malformations, development of an understanding of the molecular and genetic mechanisms of normal and abnormal morphogenesis, and understanding the role that embryogenesis and organogenesis play in the development of human malformations were the central topics of this meeting. The organizers placed emphasis on the interplay between the environment and genes as the causes of human birth defects.

  • Craniofacial Morphogenesis and Tissue Regeneration Gordon Research Conference, Sunday, April 11, 2010 - Friday, April 16, 2010
    Location: Il Ciocco Hotel and Resort, Barga , Italy
    Description: The goal of this conference was to advance the field of craniofacial morphogenesis and regeneration and treatment of rare craniofacial diseases by communicating the most recent findings from the field. The interdisciplinary group of scientists working in basic science and translational fields encouraged cross-fertilization of ideas, experimental systems, animal models, and data sets for solving critical questions concerning craniofacial biology, ultimately leading to identification of practical strategies for treatment and prevention of a broad range of diseases affecting head structures. The conference encouraged new investigators and trainees to enter the field and to form collaborations with more established scientists. The conference also identified linkages between basic, translational, and clinical researchers and charted a plan of action for the future of the field.

  • Workshop on Universal Reporting Parameters for the Speech of Individuals with Cleft Palate, Friday, April 30, 2004 - Sunday, May 02, 2004
    Description: The goals of this conference were to adopt a universal reporting system including evaluation procedures, parameters of the system, guidelines in description of speech, speech sampling, use of scales and scoring, and data management and mapping and to identify a research agenda.

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