Fragile X syndrome
Other Names for this Disease
- Fra(X) syndrome
- FRAXA syndrome
- Marker X syndrome
- Martin-Bell syndrome
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.
Gordon Research Conferences CAG Triplet Repeat Disorders and the associated Graduate Research Seminar, Saturday, June 22, 2013 - Friday, June 28, 2013
Location: Waterville Valley Resort, Waterville Valley, NH
Description: The 2013 Gordon Research Conference on CAG Triplet Repeat Disorders will bring together top scientists from around the world to discuss high-impact, interdisciplinary research on CAG Triplet Repeat Disorders. The objective of the conference is to promote scientific discussion and facilitate interdisciplinary exchange by bringing leading researchers in the field together with a broad range of experts representing; clinicians, diagnosticians, neurobiologists, pathologists, geneticists and molecular biologists.
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.
Neural Interfaces Conference 2010 , Monday, June 21, 2010 - Tuesday, June 22, 2010
Location: Long Beach Convention Center, Long Beach, California
Description: The goal of the workshop was to present state-of-the-art technological advances to both the neural prosthesis and deep brain stimulation (DBS) communities while encouraging interaction between these two groups to develop new collaborations to create therapies for human use. In addition, inclusion and showcasing of trainees was an important goal. Student poster presentations fostered scientific exchange, networking, and communication among registrants and 20 travel awards were given to qualifying undergraduate, graduate or medical students, and postdoctoral fellows. One such interaction between student and principal investigator (PI) has resulted in the student becoming a postdoctoral fellow in the PI’s laboratory.
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.
Interdisciplinary Training Conference in Developmental Disabilities, Monday, March 15, 2010 - Tuesday, March 16, 2010
Location: Annapolis, Maryland
Description: The goal of this meeting was to mentor the career development of a “hybrid” junior scientist working in developmental disabilities research, including those within T32 training programs as well as other training programs. The focus was on pre- and postdoctoral students (scholars-in-training) because interdisciplinary training after scientific formation appears to be less effective in nurturing biobehavioral scientists with an integrated focus.
Outcome Measures for Clinical Trials in Children with Fragile X Syndrome – Part II, Thursday, November 05, 2009 - Friday, November 06, 2009
Location: Bethesda Marriott Pooks Hill, Bethesda, MD
Description: The goals of the first meeting were to (1) describe outcome measures for safety and efficacy when treating children with FXS, (2) assess validation of those measures for clinical studies, and (3) describe approaches for preclinical toxicology studies to define efficacy and safety.
2009 Triplet Repeat Disorders Gordon Conference, Sunday, May 31, 2009 - Friday, June 05, 2009
Location: Waterville Valley, NH
Description: The top two priorities of this conference were training and the communication of cutting-edge science in the area of CAG triplet repeat disorders. The focus of this conference was on areas of rapid advancement and latest developments. Speakers were selected for their expertise, recent contributions to the field, and ability to provide lively presentations. The structured discussion leaders were instructed to focus on issues that cut across each presentation in a session.
Workshop on Reproduction and the Fragile X Premutation, Wednesday, April 13, 2005 - Friday, April 15, 2005
Location: William F. Bolger Center, Potomac, MD
Description: Workshop goals were to examine the basic science and clinical and epidemiological evidence regarding the fragile X premutation and its effects on reproduction.