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Webinar: The psychological cost of rare disease

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This free webinar will be broadcast on September 23rd at noon (ET; 6pm CET) and will be available free of charge 48 hrs later on demand or as a podcast.

It has been well established that mental health goes hand in hand with physical health. Living with a chronic condition places a daily emotional strain on both patients and caregivers. For those with a rare disease, the situation is exacerbated by unique challenges, including longer time to diagnosis; more frequent misdiagnoses; few, if any, available treatments; and often complex care. This greater mental load, accompanied by the physical challenges that come with a rare disease, has profound psychological implications. In addition, there are intractable well-being issues around genetic testing that need to be addressed, in concert with the real possibility of genetic therapies in the near future. How can these realities be compassionately and sensitively discussed, and how might they impact the way patients think about their medical condition? In this webinar, we examine these issues and address how physicians and the medical community can better support those living with a rare disease as well as their caregivers.


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Or to listen it as a podcast:



Kathleen Bogart, Ph.D. (Oregon State University, Corvallis, Oregon)

Debra Regier, M.D., Ph.D. (Children’s National Hospital, Washington, DC)

Amy Hunter, Ph.D. (Genetic Alliance UK, London, UK)

Kym Winter (Rareminds, St. Albans, UK)

Sean Sanders, Ph.D. (Science/AAAS, Washington, DC)

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