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Living with a genetic or rare disease can impact the daily lives of patients and families. These resources can help families navigate various aspects of living with a rare disease.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
18th Annual Meeting of the PanAmerican Society of Pigment Cell Research
Sunday, September 8, 2013 -
Wednesday, September 11, 2013
Location: Fluno Center, University of Wisconsin, Madison, WI
Description: The meeting is expected to enhance and benefit, by bringing together a relatively small group of scientists, the knowledge, collegiality, collaboration, and synergy within the pigment cell research community. More importantly, the meeting serves to encourage and support young investigators in their careers.
Contact: Hung Tseng, Ph.D., (301) 496-0810, firstname.lastname@example.org
Co-funding Institute(s): National Institute of Arthritis and Musculoskeletal and Skin Diseases, Office of Rare Diseases Research
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.
Contact: Jack Welch, M.D., Ph.D., email@example.com@nih.gov
Co-funding Institute(s): National Cancer Institute, Office of Rare Diseases Research
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