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

Charcot-Marie-Tooth disease with ptosis and parkinsonism


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

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.

  • Translational Neuromuscular Research, Diverse Diseases, Convergent Themes, Monday, September 19, 2011 - Wednesday, September 21, 2011
    Location: Beaver Hollow Conference Center, Java Center, NY
    Description: The infrastructure for this conference was developed by the MSG, whose investigators have worked for the past 10 years to secure extramural funding and to develop outcome measures for clinical research/experimental muscle and other neuromuscular diseases. The goal of this conference is to help identify commonalities across therapy development in neuromuscular disease to help ensure that lessons learned in any one disease are disseminated across the neuromuscular community.

  • Third NIH Workshop on Gaucher Disease and Parkinsonism, Thursday, April 08, 2010 - Friday, April 09, 2010
    Location: NIH- the Cloister, Bethesda, Maryland
    Description: Workshop goals were to (1) determine the appropriate human, animal, or cell-based models to better understand this correlation; (2) explore the mechanisms and/or pathways involved; and (3) establish international collaborations to enhance progress in the field and to make recommendations for future study.

  • 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.

  • FTD Workshop to Develop CDEs and Pathology Data Elements for Future Clinical Studies, Tuesday, February 02, 2010 - Wednesday, February 03, 2010
    Location: Miami, Florida
    Description: The goals of the workshop were to (1) establish a protocol for standardized collection of first and serial neurological and neuropsychological data on FTD patients within the interested ADCs; (2) establish FTD-specific pathology data elements and determine whether the ADC pathology protocol addresses these elements or modification is needed for a FTD-specific pathology module; (3) develop a plan to integrate FTD data into the NACC data structure and allow linkage to other ADCs; (4) develop a mechanism to roll out a new data plan within the ADC community; and (5) form a clinical task force for FTD to monitor collection of standardized data.

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