Tools

LEADER 03247cam a2200577 i 4500

001 on1338231536;

003 OCoLC;

005 20231106090846.0;

008 220728t20232023nyu e b 001 0 eng ;

010 a| 2022023324;

019 a| 1365398783;

020 a| 9780399576133q| hardcover;

020 a| 0399576134q| hardcover;

020 z| 9780399576157q| electronic book;

035 a| (Sirsi) o1338231536;

035 a| (OCoLC)1338231536z| (OCoLC)1365398783;

042 a| pcc;

049 a| NEHH;

050 00 a| RJ399.L95b| M37 2023;

060 4 a| QU 265.5.L5;

082 00 a| 618.92/00422| 23/eng/20220802;

100 1 a| Marcus, Amy Dockser,e| author.=| ^A446190;

245 10 a| We the scientists :b| how a daring team of parents and doctors forged a new path for medicine /c| Amy Dockser Marcus.;

246 30 a| How a daring team of parents and doctors forged a new path for medicine;

264 1 a| New York :b| Riverhead Books,c| 2023.;

300 a| xxx, 222 pages ;c| 22 cm;

336 a| textb| txt2| rdacontent;

337 a| unmediatedb| n2| rdamedia;

338 a| volumeb| nc2| rdacarrier;

504 a| Includes bibliographical references and index.;

505 0 a| Introduction: We the scientists -- The here and now -- A different fear -- The fishing expedition -- The catalysts -- The opera singer -- The broad jump -- New hit -- Reverberations -- Persuasion -- The greater good -- Complications -- The community's drug -- Lilies and doves -- The cathedral of science.;

520 a| "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"--c| Provided by publisher.;

650 0 a| Niemann-Pick diseasesx| Treatment.=| ^A1462332;

650 0 a| Rare diseasesx| Patients.=| ^A856309;

650 0 a| Genetic disorders in childrenx| Patientsx| Family relationships.=| ^A650848;

650 0 a| Parents of children with disabilities.=| ^A149243;

650 12 a| Rare Diseasesx| therapy.=| ^A945885;

650 12 a| Niemann-Pick Disease, Type Cx| therapy.=| ^A1462502;

650 12 a| Community-Based Participatory Research.=| ^A1037546;

650 12 a| Parent-Child Relations.=| ^A918298;

650 22 a| Parents.=| ^A919394;

650 22 a| Disabled Children.=| ^A931428;

949 a| QU 265.5.L9 M322 2023h| HSL70i| 31740082826649p| $28.00o| hmt;

994 a| C0b| NEH;

096 a| QU 265.5.L9b| M322 2023;

596 a| 4;

998 a| 6220127;

999 a| QU 265.5.L9 M322 2023w| NLMc| 1i| 31740082826649l| HSLBKm| HSLp| $28.00r| Ys| Yt| HBKu| 8/29/2023x| BOOKz| HSTACKSo| .STAFF. hmt;

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

Author/creator	Marcus, Amy Dockser author.
Format	Book
Publication	New York : Riverhead Books, 2023.
Copyright Date	©2023
Description	xxx, 222 pages ; 22 cm
Subjects	Niemann-Pick diseases--Treatment. Rare diseases--Patients. Genetic disorders in children--Patients. --Family relationships. Parents of children with disabilities. Rare Diseases--therapy. Niemann-Pick Disease, Type C--therapy. Community-Based Participatory Research. Parent-Child Relations. Parents. Disabled Children.

Portion of title	How a daring team of parents and doctors forged a new path for medicine
Contents	Introduction: We the scientists -- The here and now -- A different fear -- The fishing expedition -- The catalysts -- The opera singer -- The broad jump -- New hit -- Reverberations -- Persuasion -- The greater good -- Complications -- The community's drug -- Lilies and doves -- The cathedral of science.
Abstract	"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.
Bibliography note	Includes bibliographical references and index.
Issued in other form	Online version: Dockser Marcus, Amy. We the scientists First edition. New York : Riverhead Books, 2023 9780399576157
LCCN	2022023324
ISBN	9780399576133 hardcover
ISBN	0399576134 hardcover
ISBN	electronic book

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

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