- Congenital cutaneous multifocal kaposiform hemangioendothelioma
- Kaposiform hemangio-endothelioma
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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.
Interdisciplinary Workshop on Vascular Anomalies Associated with Coagulopathies, Thursday, October 06, 2011 - Friday, October 07, 2011
Location: Crowne Plaza Milwaukee, Wauwatosa , Wisconsin
Description: Our long-term goal is the improvement of care for infants and children affected by the rare vascular tumors, KHE/KMP and MLT. The overall goal of this workshop is to provide an open forum for an interdisciplinary team of expert clinicians and investigators to accelerate the development of guidelines of care and foster both clinical and basic science research in this field.
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.