- Dementia, frontotemporal, with parkinsonism
- Frontotemporal dementia with parkinsonism
- Frontotemporal lobe dementia (FLDEM)
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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.
9th International Conference on Frontotemporal Dementias, Wednesday, October 22, 2014 - Saturday, October 25, 2014
Location: Vancouver, BC, Canada
Description: <p>The 9th International Conference on Frontotemporal Dementias (ICFTD)<span> </span>is held every two years and is the only regularly scheduled international conference devoted to Frontotemporal dementia (FTD), making it an important opportunity for FTD clinicians, researchers, trainees and caregivers from around the world to share knowledge with the goal of improving care for patients with this devastating neurodegenerative disease. This is a particularly exciting time in FTD research as significant recent advances in our understanding of the molecular basis of FTD now provide us with the foundation for the rational development of targeted therapies. It is anticipated that the 2014 conference will attract more than 600 international delegates.</p>
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.
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.
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.