Other Names for this Disease
- Angioedema, hereditary
- Deficiency of C1 esterase inhibitor
- Hereditary angioedema type 1
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.
Hereditary Angioedema (HAE) Conference, Friday, September 19, 2014 - Saturday, September 20, 2014
Location: San Diego, CA
Description: Anticipated goals and use of results: 1) Organize and conduct a conference that is thematically focused on growing and extending knowledge in HAE; and which become progressively more ambitious over time, reflecting the anticipated advances in research. 2) Identify topics and speakers that will clarify the most promising avenues of investigation, organize the conference in a manner that will optimally support communication between all participants, communicate the resulting discussions to the broader scientific, patient, and pharmaceutical communities. 3) Provide a supportive and constructive forum for young investigators, including female and minority scientists, to present their work and interact with more senior investigators. 4) Increase interest and awareness of HAE research among the wider research community particularly among young investigators in order to recruit new investigators into the field. 5) Ensure equal representation and access of women and underrepresented minority participants.
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.