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.

With:

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)

This podcast is the audio recording of a webinar launched by Science magazine, made in collaboration with Fondation Ipsen.

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