Fondation Ipsen

Rare Sounds

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By Roopa Ramamoorthi

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Rare Sounds

Poetry by people living with rare diseases


Age: All ages
Pagination: 54 pages
Size: 210 x 148 mm
Binding: Paperback
Language: English
First publication: April 2023
 978-2-38427-125-2 (print)/ 978-2-38427-126-9 (ePub)

“The voices of millions of people, many children, living with rare diseases are often unheard. People living with rare diseases are silenced through stigma and discrimination. Poetry gives its writers power through self-expression. In this magnificent project, Dr Ramamoorthi teaches people who would otherwise be silenced to express themselves through poetry. By teaching poetry as a method of self-expression, the teacher gives voices to the silent. Not only are the poems eye-opening and heartrending, but this book includes a teaching guide so that the method is scalable. I wish for a world where people are valued for who they are and not for what they appear; this beautiful collection of poetry takes us one step closer.”
James A. Levine (MD, PhD, Professor, President, Fondation Ipsen)

Roopa Ramamoorthi is a scientist and published poet as well as Director for the Catalyst and InVent Fund at UCSF. Her essays, poetry and short stories have appeared in over 80 publications including various anthologies, perspectives on NPR and she has been featured at former San Francisco poet laureate Kim Shuck’s poetry events. She feels honored to have conducted the poetry workshops with people living with rare diseases and to help send their voices out into the world.


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