Other Names for this Disease
- Amyloidosis AL
- Amyloidosis primary systemic
- Light chain amyloidosis
- Primary AL amyloidosis
- Primary amyloidosis (Formerly)
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.
Systemic Amyloidosis Focus Group Workshop, Tuesday, June 20, 2006
Location: Marriott Hotel and Conference Center, Bethesda, MD
Description: The amyloidoses contain a large group of disorders that have in common the presence of insoluble protein deposits in tissues. Most amyloidoses are diffuse, that is, multisystemic. Treatments vary for any one amyloidosis, and treatments range from anti-inflammatory treatment, dialysis, or chemotherapy followed by stem cell replacement to reduce the levels of monoclonal immunoglobulin to organ transplantation, particularly liver and kidneys. ORD and a broad-based NIH planning group developed steps needed for a small, comprehensive conference with invited experts to identify scientific needs and opportunities and to provide input into developing a draft research plan. Participants considered recommendations from the scientific conferences held in 2005 and provided advice on a comprehensive, detailed research and treatment plan for the amyloidoses.