Amyotrophic lateral sclerosis
- Amyotrophic lateral sclerosis type 1
- Charcot disease
- Lou Gehrig disease
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ORDR Co-Sponsored Conferences
ALS Clinical Trials Guidelines, February 2016
Location: Warrenton, VA
Description: Specific Aims: 1. To finalize the formation of an Organizing Committee and Advisory Board of international ALS physician and physician-scientist volunteers to develop and organize an international meeting that will update the present ALS clinical trial guidelines; 2. To hold an international conference o review the issues and current status of clinical trials; 3. To discuss and develop guidelines for ALS RCTs; and 4.To publish the guidelines in major neurology journals and promote implementation of these guidelines into future ALS trials.
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Tuesday, June 09, 2015
Location: Building 31, 6C, Room 6, 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.
American Society of Gene & Cell Therapy (ASGCT) 18th Annual Meeting, Wednesday, May 13, 2015 - Saturday, May 16, 2015
Location: New Orleans, LA
Description: From our plenary lectures, this year to be given by Drs. Steven Rosenberg and Anthony Atala, to our 19 scientific symposia featuring invited speakers from across our discipline, to our nightly abstract poster receptions, where the majority of the over 700 abstracts submitted to the Annual Meeting are presented, the ASGCT Annual Meeting is certain to be the premiere scientific meeting in our field.
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>
18th International Congress of the World Muscle Society , Tuesday, October 01, 2013 - Saturday, October 05, 2013
Location: Asilomar Conference Grounds, Asilomar, California
Description: The symposium will be in the traditional WMS format with 3 selected topics: Myometrix in Health and Disease, Immunity and Muscle Disease, Advances in Therapy for Neuromuscular Disorders, and contributions will also be welcome on new advances across the neuromuscular field. One day of the symposium will be dedicated to each of the selected areas. Invited keynote speakers will summarize the state of the art on the selected topics, covering clinical, molecular and other aspects. The sessions will comprise contributed oral papers and poster presentations with guided discussions
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.
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.
Drug Discovery in ALS: Opportunities and Challenges, Sunday, March 04, 2012 - Wednesday, March 07, 2012
Location: Washington , D.C.
Description: The goals of the workshop are:  To bring clinical and scientific leaders from academia and industry together to focus on drug discovery for ALS.  To enable discussion and new project ideas to evolve from the interaction of researchers with different expertise in ALS and related fields.  To bring young researchers at an early stage of their careers to a stimulating and educational forum enabling them to interact and learn from their peers.  To discuss three key areas that impact ALS Drug Discovery and related fields: A) Academic and Industry Partnerships, B) New Opportunities for Biomarker studies in ALS, and C) Clinical Trials Networks to enhance patient enrollment and standardization of trials between sites.
Translational Neuromuscular Research, Diverse Diseases, Convergent Themes, Monday, September 19, 2011 - Wednesday, September 21, 2011
Location: Beaver Hollow Conference Center, Java Center, NY
Description: The infrastructure for this conference was developed by the MSG, whose investigators have worked for the past 10 years to secure extramural funding and to develop outcome measures for clinical research/experimental muscle and other neuromuscular diseases. The goal of this conference is to help identify commonalities across therapy development in neuromuscular disease to help ensure that lessons learned in any one disease are disseminated across the neuromuscular community.
NIH ALS Conference: Clinical Research to Find the Pathogenesis and Cause of ALS, Wednesday, September 07, 2011 - Friday, September 09, 2011
Location: Tarrytown House Estate and Conference Center, Tarrytown, NY
Description: This conference is designed to stimulate the development of collaborative research projects between amyotrophic lateral sclerosis (ALS) physicians and basic scientists. It is expected that conference participants will develop a consensus regarding current research gaps and recommended next steps to enhance patient-oriented research in ALS. The previous “Tarrytown 1” conference, which was held in 2003, resulted in the formation of a new ALS research group that facilitated the biobanking of ALS biospecimens. It is expected that the 2011 conference will have similar tangible results.
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.
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.