Amyotrophic lateral sclerosis-parkinsonism/dementia complex 1
- Amyotrophic lateral sclerosis, Parkinsonism/Dementia complex of Guam
- Guam disease
- Amyotrophic lateral sclerosis-parkinsonism-dementia complex
- Amyotrophic lateral sclerosis-parkinsonism-dementia of Guam
- Lytico-Bodig disease
News & Events
ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
2015 Muscle: Excitation/Contraction Coupling Gordon Research Conference & Gordon Research Seminar, Saturday, May 30, 2015 - Friday, June 05, 2015
Location: Sunday River, Newry, ME
Description: The 2015 Gordon Research Conference (GRC) and Gordon Research Seminar (GRS) on Muscle: Excitation/Contraction Coupling (ECC) will once again bring together established leaders and new investigators from around the globe to present their latest unpublished research, as well as engage in meaningful scientific and social interactions. This is the premier meeting of basic and translational scientists interested in the molecular mechanisms of ECC and how defects in this process lead to debilitating and life-threatening muscle disorders.
NIH ALS Conference: Clinical Research to Find the Pathogenesis and Cause of ALS, Wednesday, September 07, 2011 - Friday, September 09, 2011
Location: Tarrytown House Estate and Conference Center, Tarrytown, NY
Description: This conference is designed to stimulate the development of collaborative research projects between amyotrophic lateral sclerosis (ALS) physicians and basic scientists. It is expected that conference participants will develop a consensus regarding current research gaps and recommended next steps to enhance patient-oriented research in ALS. The previous “Tarrytown 1” conference, which was held in 2003, resulted in the formation of a new ALS research group that facilitated the biobanking of ALS biospecimens. It is expected that the 2011 conference will have similar tangible results.
Third Genome Dynamics in the Neurosciences Conference, Sunday, July 18, 2010 - Thursday, July 22, 2010
Location: The Hilton Metropole, Brighton, England
Description: The goal of this meeting was to integrate basic processes of DNA damage signaling and repair and clinical aspects of neurological and neurodegenerative disease. The program was designed to bring together leading scientists with primary interests in DNA damage signaling with those working in specific related neurodegenerative disease areas as a means for integrating these fields. It was anticipated that this would generate insights into how normal processes of genome maintenance in the brain contribute to the prevention of a wide range of diseases.
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.
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.