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Genetic and Rare Diseases Information Center (GARD)

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Alport syndrome

Other Names for this Disease
  • Alport syndrome, X-linked
  • Congenital hereditary hematuria
  • Hemorrhagic familial nephritis
  • Hemorrhagic hereditary nephritis
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ORDR-Sponsored Conferences

  • 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.

  • The Alport Syndrome Symposium for Physicians, Researchers, and Families, Saturday, August 28, 2010
    Location: New York
    Description: The goals of this symposium were to (1) bring together an international group of Alport syndrome researchers with affected patients and families; (2) provide clinician scientists, basic researchers, pediatric nephrologists, and families with the most recent information on the genetics, clinical features, pathogenesis, diagnosis, and treatment of Alport syndrome; (3) attract junior investigators and trainees to Alport syndrome research; (4) build collaborations among patients and families, clinicians, and researchers that will promote effective recruitment for clinical trials; and (5) educate and empower patients and families through interaction with many of the foremost clinician scientists and basic investigators in the field. The symposium aimed to generate enthusiasm and support for clinical trials of Alport syndrome therapies as well as effective recruitment strategies.

  • 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.