Polycystic kidneys, severe infantile with tuberous sclerosis
Other Names for this Disease
- Tuberous sclerosis polycystic kidney disease contiguous gene 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.
2014 Mechanisms of Epilepsy and Neuronal Synchronization Gordon Research Conference, Sunday, August 17, 2014 - Friday, August 22, 2014
Location: Mount Snow Resort, West Dover, VT
Description: <p>The main goal of the study of epilepsy is to identify the causes and complex mechanisms that underlie the abnormal, synchronous, electrical discharges that occur in hyperexcitable neuronal networks during seizures. How these basic science findings can someday be translated into new therapies for the nearly 3 million Americans suffering with epilepsy is another long-term goal. A unique, intellectually challenging aspect of epilepsy research arises from the fact that it encompasses virtually all major levels of biological organization, from circuits and behavior to stem cells and neurodevelopment. Thus a major purpose of this Gordon Research Conference is to bring together geneticists, molecular biologists, developmental neuroscientists, neuroanatomists, electrophysiologists, clinician-scientists and computational neuroscientists working on basic mechanisms related either directly or indirectly to seizure generation to synthesize current advances and to set the stage for future discoveries.</p>
Second International Workshop On Brain Plasticity, Hemispheric Specialization, and Neuro-Rehabilitation After Cerebral Hemispherectomy, Wednesday, July 09, 2014 - Friday, July 11, 2014
Location: Paradise Pier Hotel at Disneyland, Anaheim, CA
Description: <p>The main objective of this interdisciplinary conference is to focus on the current state of scientific knowledge in neuro-rehabilitation/habilitation, neuro-reorganization, and cognition after cerebral hemispherectomy, with an aim toward advancing clinical practice by formulating a five-year research strategy to compile comprehensive guidelines for recovery. A conference summary will also be disseminated.</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.
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.
Nutritional Challenges in the High-Risk Infant, Monday, September 14, 2009 - Tuesday, September 15, 2009
Location: DC Metro Area,
Description: Evidence was critically evaluated at this workshop. Current gaps in knowledge in this area were identified and research priorities were formulated. The workshop summary will provide NICHD and the scientific community a template to address the scientific and clinical issues related to nutrition and neonatal care.