- Sarcoma family syndrome of Li and Fraumeni
- SBLA syndrome (Sarcoma, Breast, Leukemia, and Adrenal Gland)
- Li Fraumeni syndrome
News & Events
On this page
ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
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.
Li-Fraumeni Syndrome: A Multidisciplinary State-of-the-Science Conference, Tuesday, November 02, 2010
Location: Natcher Auditorium (Building 45), NIH , Bethesda, Maryland
Description: We anticipated that this would be the first of several Li-Fraumeni syndrome (LFS)-related scientific meetings. The goals of this first meeting were to bring the clinicians/scientists together to review the current state of knowledge and, more importantly, to foster further collaborations among institutions that have heretofore pursued their research independently. We planned to use this meeting to create a North American LFS consortium. The careful coordination of research efforts is essential to efficiently advance our understanding of this rare syndrome as well as to begin the process of creating a comprehensive, evidence-based management program for LFS.
American Society for Microbiology (ASM) Conference on DNA Repair and Mutagenesis, Saturday, May 30, 2009 - Friday, June 05, 2009
Location: Fairmont Chateau Whistler, British Columbia, Canada
Description: The major goals of this conference were to disseminate novel, unpublished results; identify new technologies and clinical therapies; and foster new collaborations among participants. A hallmark of this conference is the exceptionally broad cross-section of participants in terms of research focus (basic, translational, and clinical), age (the large meeting venue draws many younger scientists, graduate students, and senior investigators; ASM committed $20,000 to subsidize graduate student travel), institutional affiliation (academia, government, private industry, and publishing), and geography. Numerous opportunities were provided for in-depth discussion during and after sessions and at meals, including the popular evening poster sessions to promote informal interactions among all participants.