Albany Med to Host 'World Rare Diseases' Forum
In recognition of the 6th annual World Rare Diseases Day, Albany Medical Center, in cooperation with the Global Genes Project, the Oley Foundation and local organizer Ed Fennell, will present a World Rare Diseases forum on Thursday, February 28 from 4pm to 6pm at the Hilton Garden Inn at Albany Medical Center.
In the United States, a disease is considered rare when it affects fewer than 200,000 people nationwide. The National Institutes of Health estimates there are nearly 7,000 known rare diseases in the world affecting approximately 300 million people; more than AIDS and cancer combined. It’s estimated that 80 percent of those diseases affect children.
Doctors from Albany Med’s pediatric infectious disease division will discuss and take questions about treatment of rare diseases. They will be joined by a patient who, because of a rare disease called short bowel syndrome, has been on intravenous (IV) feedings for the last 30 years, and a representative from the Oley Foundation, an organization that supports patients who require long-term IV feedings.
The forum will be moderated by Fennell, the grandfather of two children who are battling rare diseases. It will include a question and answer session as well as time for families who are affected by rare diseases to share their stories.
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