Juvenile amyotrophic lateral sclerosis
Other Names for this Disease
- Amyotrophic lateral sclerosis, juvenile
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.
Economic Considerations in the Development of Therapies for Neuromuscular Disease, Sunday, September 21, 2014 - Tuesday, September 23, 2014
Location: Beaver Hollow Conference Center, Java Center, NY
Description: <p>The goals of the conference are:<span> </span>1.) To provide an informal environment away from competing activities for the interaction/ development of collaborations among established investigators and between senior and new/junior investigators, and to present a collaborative environment for new project development among investigators.<span> </span>2.) To offer senior investigators opportunities to determine the appropriateness of sites/investigators to participate in new trials, providing an entry point for junior trainees/investigators to become involved in studies.<span> </span>3.) To provide an opportunity for industry representatives to interact with clinical investigators to discuss collaboration.<span> </span>These discussions will increase investigator involvement with new industry therapeutics.</p>
Novel Molecular Mechanisms of Neuromuscular Disease: Implications for Therapy, Monday, September 16, 2013 - Wednesday, September 18, 2013
Location: Oxford, England
Description: This conference will bring new collaborative opportunities and substantive scientific information to neuromuscular investigators. It will provide senior investigators, NIH program staff, and patient advocacy group/foundation representatives opportunities to meet with junior/trainee investigators who are in the process of developing careers in clinical/translational investigation. Trainees will interact with leaders in the field as they discuss innovative methodology designed to meet the challenges of studies of uncommon diseases and provide perspective on clinical studies in various phases of development. Younger investigators will be profiled during a hot topics session. Furthermore, the poster sessions, the discussions after each session, the meals and other informal settings offer them a chance to question and to present their own ideas.