The psychological cost of rare disease

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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