Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.

Diseases

Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Proteus syndrome


Other Names for this Disease

  • Hemihypertrophy and macrocephaly
  • Partial gigantism of hands and feet, nevi, hemihypertrophy, macrocephaly
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

  • 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.

  • 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.

Other Names for this Disease
  • Hemihypertrophy and macrocephaly
  • Partial gigantism of hands and feet, nevi, hemihypertrophy, macrocephaly
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.