Other Names for this Disease
- Gronblad Strandberg syndrome
The 10th Annual North American Genetic Analysis of ABC Transporters Workshop, Thursday, September 19, 2013 - Friday, September 20, 2013
Location: NCI-Frederick, Frederick, MD
Description: The goals of this conference are to bring together multidisciplinary experts in ciliary motility, mucus, mucociliary interactions and other cilia/fluid systems to discuss the latest results in these fields and to investigate new ways of approaching these dynamic interactive systems to further understanding of their properties and impact in human health and disease.
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.
Pseudoxanthoma Elasticum Research 2010 Conference, Monday, November 29, 2010 - Tuesday, November 30, 2010
Location: North Bethesda Marriott , Bethesda, MD
Description: The specific aims of this conference were to review the current status of basic and translational research on pseudoxanthoma elasticum (PXE), determine the most relevant biomarkers and clinical endpoints in preparation for clinical trials, and evaluate a number of hypothetical therapeutic interventions including vitamin K therapy and anti-angiogenesis therapies. Additionally, meeting participants reviewed the understanding of the clinical manifestations of PXE in order to come to consensus on diagnostic criteria. The results of the meeting will be used to plan for future research and translational applications.
2010 Genetic Alliance Annual Conference , Thursday, July 15, 2010 - Sunday, July 18, 2010
Location: Bethesda North Marriott Hotel and Conference Center , Bethesda, Maryland
Description: The Genetic Alliance Annual Conference is consistently inspirational and enables partnership among all stakeholders: advocates and community leaders, health and industry professionals, policymakers and academicians.
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.
The Sixth Annual North American Genetic Analysis of ABC Transporters Workshop, Thursday, September 24, 2009 - Friday, September 25, 2009
Location: Frederick, MD
Description: The objectives of the meeting were to bring together researchers in the field of ABC transporters to discuss advances in the field and new research findings. Presentations included talks by students and postdoctoral scientists on their current research, overview presentations by leading researchers in the field, and poster presentations. In addition, presentations were given by representatives of rare disease foundations to provide interaction between scientists in the field and the disease foundations. The goals were to bring the top research groups in the field together with representatives from major disease foundations to discuss new data and educate new investigators in the field. New research ideas and funding ideas, productive collaborations, and job opportunities for young investigators were generated.