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Genetic and Rare Diseases Information Center (GARD)

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Proteus syndrome

Other Names for this Disease
  • Hemihypertrophy and macrocephaly
  • Partial gigantism of hands and feet, nevi, hemihypertrophy, macrocephaly
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ORDR-Sponsored Conferences

  • AKT/PI3KCA Pathway-associated Mosaic Disorders, Wednesday, September 11, 2013 - Wednesday, September 11, 2013
    Location: Building 45, NIH Campus, Bethesda, MD
    Description: The goals of this workshop are to: (1.) Aggregate clinical and molecular data on patients from the groups to draw conclusions on the range of phenotypes and clinical delineation of the disorders. (2.) Develop consensus on clinical diagnostic categories, proper names for the entities, and molecular correlations. (3.) Propose an agenda for moving forward with considerations for both symptomatic and primary treatment.

  • 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.

  • David W. Smith Workshop on Malformations and Morphogenesis, Friday, September 09, 2011 - Wednesday, September 14, 2011
    Location: UCLA Lake Arrowhead Conference Center, Lake Arrowhead , CA
    Description: Themes for 2011; Mechanisms of normal and abnormal morphogenesis including insights from prenatal imaging; Somatic overgrowth; Brain overgrowth; Cortical dysplasia; Signaling pathways in morphogenesis; Angiogenesis and vascular malformations in genetic syndromes

  • VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , Thursday, March 18, 2010 - Saturday, March 20, 2010
    Location: Palais Rouge Convention Center, Palermo, Buenos Aires, Argentina
    Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.