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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Cole Carpenter syndrome


Other Names for this Disease

  • Bone fragility with craniosynostosis, ocular proptosis, hydrocephalus, and distinctive facial features
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Conferences


ORDR-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.

  • 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.

  • 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.

  • 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.

  • Hydrocephalus: Myths, New Facts, Clear Directions, Thursday, September 29, 2005 - Saturday, October 01, 2005
    Location: Marriott White Flint, Bethesda, MD
    Description: Approximately 90% of infants born with spina bifida have hydrocephalus. Other congenital abnormalities such as aqueductal stenosis due to posterior fossa developmental disorders can also cause hydrocephalus. Participants discussed current knowledge gaps in clinical hydrocephalus research.

Other Names for this Disease
  • Bone fragility with craniosynostosis, ocular proptosis, hydrocephalus, and distinctive facial features
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.