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We the scientists : how a daring team of parents and doctors forged a new path for medicine / Amy Dockser Marcus.

Van Pelt Library RJ399.L95 M37 2023
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Format:
Book
Author/Creator:
Marcus, Amy Dockser, author.
Language:
English
Subjects (All):
Niemann-Pick diseases--Treatment.
Niemann-Pick diseases.
Rare diseases--Patients.
Rare diseases.
Genetic disorders in children--Patients--Family relationships.
Genetic disorders in children.
Parents of children with disabilities.
Rare Diseases--therapy.
Niemann-Pick Disease, Type C--therapy.
Community-Based Participatory Research.
Parent-Child Relations.
Parents.
Disabled Children.
Medical Subjects:
Rare Diseases--therapy.
Niemann-Pick Disease, Type C--therapy.
Community-Based Participatory Research.
Parent-Child Relations.
Parents.
Disabled Children.
Physical Description:
xxx, 222 pages ; 22 cm
Other Title:
How a daring team of parents and doctors forged a new path for medicine
Place of Publication:
New York : Riverhead Books, 2023.
Summary:
"Pulitzer Prize-winning reporter Amy Dockser Marcus shows what happened when a group of parents joined forces with doctors and researchers to try to save children's lives. Parents whose children had been diagnosed with the rare and fatal genetic condition Niemann-Pick Type C disease recognized there would never be a treatment in time to save their children if things stayed the same, so the parents set up a collaboration with researchers and doctors in search of a cure. Their social experiment reveals new pathways for treating disease and conducting research"-- Provided by publisher.
Contents:
Machine generated contents note: 1. The Here and Now
2. A Different Fear
3. The Fishing Expedition
4. The Catalysts
5. The Opera Singer
6. The Broad Jump
7. New Hit
8. Reverberations
9. Persuasion
10. The Greater Good
11. Complications
12. The Community's Drug
13. Lilies and Doves
14. The Cathedral of Science.
Notes:
Includes bibliographical references and index.
Other Format:
Online version: Dockser Marcus, Amy. We the scientists
ISBN:
9780399576133
0399576134
OCLC:
1317834366
Publisher Number:
99992924952

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