Other Names for this Disease
- Basal ganglia disease adult-onset
- Ferritin-related neurodegeneration
News & Events
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.
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.
Brain, Blood and Iron: Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation, Friday, October 01, 2010 - Saturday, October 02, 2010
Location: Doubletree Hotel,, Bethesda, Maryland
Description: The overall objectives of this workshop were to (1) define neuroacanthocytosis (NA) and neurodegeneration with brain iron accumulation (NBIA) research priorities; (2) determine resources that are needed in order to foster research; (3) stimulate interest in research into NA and NBIA among scientists in related fields; (4) generate collaborations between those working in related disciplines, with particular relevance to NA and NBIA; and (5) attract early career investigators to these fields.
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.
Therapeutic Targets for the Congenital Muscular Dystrophies, Thursday, July 09, 2009 - Saturday, July 11, 2009
Location: Emory University, Atlanta, Georgia
Description: The primary goal of the conference is to address, evaluate and achieve consensus on therapeutic targets in the CMDs by bringing together experts ranging from basic science to clinical trial design in rare disorders, as well as representatives from industry, advocacy and funding agencies (NIH and MDA).