Other Names for this Disease
- Clear cell adenoma
- Clear cell carcinoma
- Epithelial myoepithelial carcinoma
The Spectrum of Caregiving and Palliative Care in Rare Diseases, Winter 2014
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.
Strategies to Develop Therapies for Rare Tumors: Small Numbers, but Big Opportunities , Fall 2014
Location: NIH Natcher Conference Center, Bethesda, MD
Description: <span style="font-size: 11pt; font-family: Times New Roman,serif;">The goals of this symposium are to increase communication and build networks between researchers working in rare tumors across NIH, and to get input from patient groups, industry, and the FDA on how to overcome the biggest hurdles in the development of therapies for rare tumors. The Rare Tumors Initiative at NCI, CCR will use this information to prioritize goals for the future and will prepare a white paper summary to help guide researchers worldwide.</span>
Advancing Symptom Clusters Research on Rare Cancers, Wednesday, September 10, 2014
Location: NIH Neuroscience Building, Bethesda, MD
Description: <p>It is intended that the in-depth, interdisciplinary dialogue of this expert working group will formulate an emerging consensus on a working definition of symptom clusters and, specific gaps and opportunities that provide a foundation for a transformative strategic blueprint to guide future symptom cluster research in rare cancers. In addition, it is anticipated that workshop proceedings will inform a funding opportunity announcement.</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.
5th International Conference on Epithelial Mesenchymal Transition, Monday, October 10, 2011 - Thursday, October 13, 2011
Description: The objectives of the meeting are to 1) Bring together investigators in the separate disciplines of cancer, pathology and development to discuss their observations on EMT and explore whether there is a consensus on important components of the process. 2) Provide a forum where students and junior investigators can interact with senior investigators and display their own work and ideas in the field. 3) Expand a viable co-operative cross disciplinary forum of EMT-related researchers internationally, particularly with outreach to Asia. This will continue to provide a worldwide network for exchange of expertise, reagents and techniques across disciplines. 4) Publish a timely meeting update on cellular, molecular and genetic aspects of EMT in an appropriate cross-disciplinary international journal.
Overcoming Barriers to International Clinical Trials for Rare Cancers , Friday, December 10, 2010
Location: Bethesda, Maryland
Description: The goals of this conference were to introduce key institutional players to the topic of international clinical trials in rare cancers and to establish an ongoing dialogue. Participants left the meeting with a set of specific priorities that need to be enacted to promote these trials. The meeting promoted consensus on the way that resources are prioritized to address rare cancers. Participants were asked to convey the content of the meeting to their constituencies and to follow up with pilot concepts.
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.
Society for Inherited Metabolic Disorders Annual Meeting, Saturday, August 29, 2009 - Wednesday, September 02, 2009
Location: Manchester Grand Hyatt, San Diego, CA
Description: The rarity, uniqueness, variability, and the need for an individual approach to treatment make inborn errors of metabolism a very complicated subspecialty. As such, most geneticists do not know these disorders well and only very specialized metabolic centers deal with them. For the United States to remain preeminent in both clinical and research aspects of inborn errors of metabolism, it is critical that young physicians and scientists be attracted to and remain in this important field.