Rare Like Us

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Rare Like Us

Author : Taylor Kane
Publisher : Bookbaby
ISBN 13 : 9781543978810
Total Pages : 0 pages
Book Rating : 4.9/5 (788 download)

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Book Synopsis Rare Like Us by : Taylor Kane

Download or read book Rare Like Us written by Taylor Kane and published by Bookbaby. This book was released on 2019-09-02 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Taylor Kane was a daddy's girl from the moment she was born, smiling and cooing whenever her father was around and refusing to sleep until he held her in his arms. But shortly after she turned three years old, the unthinkable happened. Her father was diagnosed with a rare, genetic disease for which there was no cure. It wasn't long before he began to experience a number of bizarre and frightening symptoms, and young Taylor watched helplessly as the disease ravaged his body and mind, transforming him into a shell of the father she once knew: a man unable to walk, talk, swallow or understand what was going on around him. A man who no longer recognized her.Fast forward five years. Her beloved father now gone, nine-year-old Taylor is dealt another devastating blow when she learns that she is a genetic carrier of the disease that took her father's life. Not only will her future children have a fifty percent chance of inheriting the disease, she, too, faces the risk of developing symptoms of her own in the future. In Rare Like Us, Taylor, now a twenty-one-year-old college student, shares the invaluable lessons she learned growing up in a family plagued by a genetic disease so rare that most doctors have never seen it, much less heard of it. She recounts with raw honesty how she managed to conquer her childhood demons and come to terms with her grief and loss; how she transformed her pain into passion and purpose; and how she continues to strive to honor her father's legacy by living her life in a way that would make him proud. This compelling memoir of a young woman's resilience and determination will captivate and inspire not only those who have experienced the isolation and despair that comes with having a rare disease, but anyone who has struggled to find the silver lining in heartbreak or tragedy, or who is searching for hope in the face of an uncertain future.

Just Like Me!: A Book about a Girl with a Rare Disease

Author : Anne Rugari
Publisher : Braughler Books, LLC
ISBN 13 : 9780982218716
Total Pages : 22 pages
Book Rating : 4.2/5 (187 download)

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Book Synopsis Just Like Me!: A Book about a Girl with a Rare Disease by : Anne Rugari

Download or read book Just Like Me!: A Book about a Girl with a Rare Disease written by Anne Rugari and published by Braughler Books, LLC. This book was released on 2018-10-30 with total page 22 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Raising a Rare Girl

Author : Heather Lanier
Publisher : Penguin
ISBN 13 : 0525559655
Total Pages : 321 pages
Book Rating : 4.5/5 (255 download)

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Book Synopsis Raising a Rare Girl by : Heather Lanier

Download or read book Raising a Rare Girl written by Heather Lanier and published by Penguin. This book was released on 2021-07-06 with total page 321 pages. Available in PDF, EPUB and Kindle. Book excerpt: “A remarkable book . . . I found myself thinking that all expectant and new parents should read it.” —Michelle Slater A New York Times Book Review Editors' Choice In Raising a Rare Girl, Lanier explores how to defy the tyranny of normal and embrace parenthood as a spiritual practice that breaks us open in the best of ways. Like many women of her generation, when Heather Lanier was expecting her first child she did everything by the book in the hope that she could create a SuperBaby, a supremely healthy human destined for a high-achieving future. But her daughter Fiona challenged all of Lanier’s preconceptions. Born with an ultra-rare syndrome known as Wolf-Hirschhorn, Fiona received a daunting prognosis: she would experience significant developmental delays and might not reach her second birthday. The diagnosis obliterated Lanier’s perfectionist tendencies, along with her most closely held beliefs about certainty, vulnerability, God, and love. With tiny bits of mozzarella cheese, a walker rolled to library story time, a talking iPad app, and a whole lot of pop and reggae, mother and daughter spend their days doing whatever it takes to give Fiona nourishment, movement, and language. Loving Fiona opens Lanier up to new understandings of what it means to be human, what it takes to be a mother, and above all, the aching joy and wonder that come from embracing the unique life of her rare girl.

Love, Death & Rare Books

Author : Robert Hellenga
Publisher : Open Road Media
ISBN 13 : 1504061152
Total Pages : 301 pages
Book Rating : 4.5/5 (4 download)

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Book Synopsis Love, Death & Rare Books by : Robert Hellenga

Download or read book Love, Death & Rare Books written by Robert Hellenga and published by Open Road Media. This book was released on 2020-03-17 with total page 301 pages. Available in PDF, EPUB and Kindle. Book excerpt: As times change for the book business, a rare book dealer lives through appraisals, auctions, danger, drama, love, and loss, in this thoughtful novel. Chas. Johnson & Sons, a rare bookstore in Chicago’s Hyde Park, has been in Gabe Johnson’s family for generations. It’s where he learned to love Romantic poetry, and where he found a romance of his own with Olivia. Geared toward a colorful community of serious collectors, the shop has survived competition from big chains, and even a violent attack for stocking The Satanic Verses. But by the time Gabe takes over, Olivia is gone, and the world of books has changed. Internet sellers and gentrifying rents force him to close. Down but not out, Gabe decides to reopen on the shores of Lake Michigan. Secretly, he hopes this new beginning will also be a return into Olivia’s arms. But just as he finds her again, Gabe faces yet another threat to the store—and everything else he holds most dear.

An Ordinary Day

Author : Karen Haberberg
Publisher : powerHouse Books
ISBN 13 : 9781576878613
Total Pages : 0 pages
Book Rating : 4.8/5 (786 download)

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Book Synopsis An Ordinary Day by : Karen Haberberg

Download or read book An Ordinary Day written by Karen Haberberg and published by powerHouse Books. This book was released on 2017-10-24 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: An Ordinary Day is a documentation of the personal lives of courageous kids who have rare genetic conditions and their families who love and support them at all cost. 1 in 10 Americans are living with a rare genetic condition. The conditions that rule the lives of these families are often overlooked by society, but for millions of people it is a matter of foremost priority. This book sheds an important and compassionate light on these existences. Life often presents challenges that seem insurmountable. Children are not exempt from this, but often through their innocence and will we can find inspiration and hope. An Ordinary Day displays unforgettable photographs set against intimate conversations, documenting the lives of 27 children living with rare genetic conditions. Readers will fall in love with these children, share in their struggles and victories, and celebrate the life-affirming spirit captured in every image. The book invites us to connect with kids like Ethan, a nonverbal 7-year-old who learns to sign to communicate his needs, 5-year-old Madison who has taken her first steps after years of crawling, and Jonathan, a 9-year-old boy who finally learns to eat with a spoon after many failed trials. Tasks often taken for granted, are profound triumphs for children afflicted with rare genetic conditions. The every day moments captured in An Ordinary Day inspire awareness and empathy, while highlighting the commonalities between families with rare genetic conditions, and more deeply between us all. Poignant and revelatory, An Ordinary Day illuminates what it means to be a family.

Extraordinary! A Book for Children with Rare Diseases (Mandarin)

Author : Evren And Kara Ayik
Publisher : Kara Ayik
ISBN 13 : 9781736034439
Total Pages : 0 pages
Book Rating : 4.0/5 (344 download)

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Book Synopsis Extraordinary! A Book for Children with Rare Diseases (Mandarin) by : Evren And Kara Ayik

Download or read book Extraordinary! A Book for Children with Rare Diseases (Mandarin) written by Evren And Kara Ayik and published by Kara Ayik. This book was released on 2022-03-03 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: 是什么让罕见病儿童非同寻常？聆听罕见病儿童埃夫伦自我成长的心路历程，探索问题答案！本书由母子联手创作，基于罕见病患者面临的挑战与机遇，就身份、包容与自我认知展开适合孩子的讨论。书中的经验全部是小作者作为超罕见病患者一路长大的亲身经历，旨在为小读者理解个人身份和罕见病对个人身份的正面影响提供指南。家庭成员和护理人员也可以积极参与孩子的探索过程，根据孩子的成长需求制定读书计划。本书插图由获奖童书插画家伊恩-戴尔绘制。《非同寻常的你！》旨在通过其由衷的文字和敏感又真实的插画鼓舞、激励所有患有罕见病的孩子活出最美好的一生。 What makes a child with a rare disease extraordinary? Explore the answer to this question while sharing a conversation with Evren about what he has learned while growing up with his own rare disease. Written collaboratively by mother and son, this book opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. The gentle lessons draw on the co-author's first-hand experience of growing up with an ultra-rare disease and offer young readers a framework for understanding personal identity and how their rare diseases can help shape it in positive ways. Family members and caregivers are invited to share in this conversation and to customize the reading according to each young reader's developmental needs. Accompanied by sensitive yet realistic illustrations created by award-winning artist and children's book illustrator Ian Dale, the heartfelt messages introduced in Extraordinary! are intended to uplift and encourage any children living with rare diseases to live their very best lives.

Rare Books Uncovered

Author : Rebecca Rego Barry
Publisher : Voyageur Press (MN)
ISBN 13 : 0760361576
Total Pages : 267 pages
Book Rating : 4.7/5 (63 download)

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Book Synopsis Rare Books Uncovered by : Rebecca Rego Barry

Download or read book Rare Books Uncovered written by Rebecca Rego Barry and published by Voyageur Press (MN). This book was released on 2018-02-27 with total page 267 pages. Available in PDF, EPUB and Kindle. Book excerpt: "Discoveries of rare and collectible books are chronicled in stories from both casual and die-hard book collectors" --

Weird Like Us

Author : Ann Powers
Publisher : Simon and Schuster
ISBN 13 : 0684838087
Total Pages : 296 pages
Book Rating : 4.6/5 (848 download)

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Book Synopsis Weird Like Us by : Ann Powers

Download or read book Weird Like Us written by Ann Powers and published by Simon and Schuster. This book was released on 2000 with total page 296 pages. Available in PDF, EPUB and Kindle. Book excerpt: Describes the various subcultures trying to reshape America today, and includes interviews with modern bohemians, who share their views on life.

Rare Breed

Author : Sunny Bonnell
Publisher : HarperCollins
ISBN 13 : 0062856944
Total Pages : 298 pages
Book Rating : 4.0/5 (628 download)

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Book Synopsis Rare Breed by : Sunny Bonnell

Download or read book Rare Breed written by Sunny Bonnell and published by HarperCollins. This book was released on 2019-09-03 with total page 298 pages. Available in PDF, EPUB and Kindle. Book excerpt: An unconventional business book for the rebels and misfits—the Rare Breeds—who don’t fit the traditional mold, offering an approach that’s anything but business as usual. “Brazen rant!” -- Seth Godin, New York Times bestselling author of This is Marketing and What to Do When It’s Your Turn In every job you’ve ever had, you’ve been judged, labeled, and made to feel like an outsider. Defiant. Dangerous. Different. A real pain-in-the-ass.The message? To be successful, you’ve got to fundamentally change. But what if -- instead of conforming -- you learned how to punch society’s codes in the nose, run like a hooligan through the corridors of entrenched power, and succeed -- not by grinding down your prickly parts, but by going all-in on who you really are? “A guide for strategic rebellion.” -- Mark Levy, founder of Levy Innovation and creator of Your Big Sexy Idea® Meet Sunny Bonnell and Ashleigh Hansberger, award-winning global brand consultants, founders of Motto, and authors of Rare Breed: A Guide to Success for the Defiant, Dangerous, and Different. In this book, you’ll come face-to-face with seven controversial virtues that are typically seen as ladder-burning, career-ending personality traits that – convention says -- keep mavericks, oddballs, and visionaries like you from getting along, getting buy-in, and getting ahead. “A beautiful reminder that you are not alone.” -- Charlamagne Tha God, New York Times bestselling author of Black Privilege Sunny and Ashleigh provide singular insight into how you can flip the script and turn your so-called “vices” into your virtues, transforming your most “undesirable” flaws into the high-octane fuel of your success. In a world that wants to own you, you’ll finally learn how to own yourself, through embracing all your parts – not just the pretty ones. College dropouts and social misfits Sunny and Ashleigh provide front-row seats to their own counterintuitive rise from broke-ass outsiders to brand consultants for iconic brands. Success, they show you, is no longer the sole purview of the Harvard MBA graduate. Your ticket to ride resides within the side of you that’s disorderly, independent, and rogue. Deep down, you’ve always been the kid to point out when the emperor has no clothes. Yet, time and time again you’ve been faced with the consequences of deviating from social expectations. This is a new conversation for a new era. What would happen if, starting today, you walked away from the sheeple? What could you build?

The Power of Rare

Author : Victoria Jackson
Publisher : Simon and Schuster
ISBN 13 : 0692928995
Total Pages : 272 pages
Book Rating : 4.6/5 (929 download)

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Book Synopsis The Power of Rare by : Victoria Jackson

Download or read book The Power of Rare written by Victoria Jackson and published by Simon and Schuster. This book was released on 2017-09-26 with total page 272 pages. Available in PDF, EPUB and Kindle. Book excerpt: "The Power of Rare is equal parts science and inspiration. In her urgent drive to help her daughter, Victoria Jackson not only transformed the competitive world of biomedical research, but also created a new medical model for generations to come." —Arianna Huffington Victoria Jackson revolutionized the beauty industry in the 1980s and '90s with her "no make-up" approach to make-up and ultimately made Victoria Jackson Cosmetics into a billion-dollar global brand. But her greatest test of the power of rare didn't come until her daughter, Ali, was diagnosed with neuromyelitis optica, or NMO—a rare, life-threatening autoimmune disease—and Victoria, driven by a mother's love, set out to find a cure for her daughter. Within days of hearing Ali's diagnosis in 2008, Victoria began the Guthy-Jackson Charitable Foundation to fund medical research into this often misdiagnosed orphan disease. Her "blueprint" called for breaking down the so-called silos of traditional medical research and bringing together some of the greatest minds to collaborate and share their findings. She hadn't expected to galvanize how medical research works, but within only a few years, that's just what she did. By focusing on the "rare" in each of us, the foundation has catalyzed breakthroughs in NMO in record time. These advances are also opening new doors to solving MS, lupus, and other autoimmune diseases—plus diseases that are not so rare, including cancer, infection, aging, and more. It has been Victoria's guiding philosophy that if she can do it, anyone can. With The Power of Rare, she shares how the foundation harnessed the power of rare to speed discoveries that help patients. Through her business savvy, wit, and heart, she offers real-world advice and inspiration for others to tap into "rare" to empower their own breakthroughs.

Used and Rare

Author : Lawrence Goldstone
Publisher : St. Martin's Press
ISBN 13 : 0312207492
Total Pages : 222 pages
Book Rating : 4.3/5 (122 download)

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Book Synopsis Used and Rare by : Lawrence Goldstone

Download or read book Used and Rare written by Lawrence Goldstone and published by St. Martin's Press. This book was released on 2010-04-01 with total page 222 pages. Available in PDF, EPUB and Kindle. Book excerpt: Journey into the world of book collecting with the Goldstones-rediscover the joy of reading, laugh, and fall in love with books all over again. The idea that books had stories associated with them that had nothing to do with the stories inside them was new to us. We had always valued the history, the world of ideas contained between the covers of a book or, as in the case of The Night Visitor, some special personal significance. Now, for the first time, we began to appreciate that there was a history and a world of ideas embodied by the books themselves. Part travel story, part love story, and part memoir, Lawrence and Nancy Goldstone's Used and Rare provides a delightful love letter to book lovers everywhere.

The Rare Find

Author : George Anders
Publisher : Penguin
ISBN 13 : 1101535806
Total Pages : 330 pages
Book Rating : 4.1/5 (15 download)

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Book Synopsis The Rare Find by : George Anders

Download or read book The Rare Find written by George Anders and published by Penguin. This book was released on 2011-10-18 with total page 330 pages. Available in PDF, EPUB and Kindle. Book excerpt: One of the nation's biggest music labels briefly signed Taylor Swift to a contract but let her go because she didn't seem worth more than $15,000 a year. At least four book publishers passed on the first Harry Potter novel rather than pay J. K. Rowling a $5,000 advance. And the same pattern happens in nearly every business. Anyone who recruits talent faces the same basic challenge, whether we work for a big company, a new start-up, a Hollywood studio, a hospital, or the Green Berets. We all wonder how to tell the really outstanding prospects from the ones who look great on paper but then fail on the job. Or, equally important, how to spot the ones who don't look so good on paper but might still deliver extraordinary performance. Over the past few decades, technology has made recruiting in all fields vastly more sophisticated. Gut instincts have yielded to benchmarks. If we want elaborate dossiers on candidates, we can gather facts (and video) by the gigabyte. And yet the results are just as spotty as they were in the age of the rotary phone. George Anders sought out the world's savviest talent judges to see what they do differently from the rest of us. He reveals how the U.S. Army finds soldiers with the character to be in Special Forces without asking them to fire a single bullet. He takes us to an elite basketball tournament in South Carolina, where the best scouts watch the game in a radically different way from the casual fan. He talks to researchers who are reinventing the process of hiring Fortune 500 CEOs. Drawing on the best advice of these and other talent masters, Anders reveals powerful ideas you can apply to your own hiring. For instance: Don't ignore "the jagged résumé"-people whose background appears to teeter on the edge between success and failure. Such people can do spectacular work in the right settings, where their strengths dramatically outweigh their flaws. Look extra hard for "talent that whispers"- the obscure, out-of-the- way candidates who most scouting systems overlook. Be careful with "talent that shouts"-the spectacular but brash candidates who might have trouble with loyalty, motivation, and team spirit. Each field that Anders explores has its own lingo, customs, and history. But the specific stories fit together into a bigger mosaic. In any field, there's an art to clearing away the clutter and focusing on what matters most. It's not necessarily hard, but it requires the courage to take a different approach in pursuit of the rare find.

More Than You Can Handle

Author : Miguel Sancho
Publisher : Penguin
ISBN 13 : 0593421361
Total Pages : 337 pages
Book Rating : 4.5/5 (934 download)

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Book Synopsis More Than You Can Handle by : Miguel Sancho

Download or read book More Than You Can Handle written by Miguel Sancho and published by Penguin. This book was released on 2022-03-01 with total page 337 pages. Available in PDF, EPUB and Kindle. Book excerpt: Now in paperback. The personally harrowing and medically enthralling story of a family's struggle to save a child from a deadly immune deficiency. A journey through the deepest valleys and highest peaks of parenting. When a two-month-old baby falls ill, his apparently ordinary symptoms turn out to signal a rare and lethal immune deficiency. For parents Miguel Sancho and Felicia Morton, the discovery that their son, Sebastian, has chronic granulomatous disease (CGD) upends their lives and leaves the family with few options, all of them terrifying. With Sebastian at constant risk of deadly infection, they spend the next six years in some degree of self-quarantine, with all its attendant anxieties and stressors, as they struggle to keep their son alive, their marriage intact, and themselves sane. The quest for a cure leads them into the alternate universe of the rare-disease community, and to the cutting edge of modern medicine, as their personal crises send them fumbling through various modalities of self-help, including faith, therapy, and meditation. With brutal honesty, Sancho describes how his struggles derail his career, put his marriage on life support, get his family evicted from a Ronald McDonald House, and ruin a Make-A-Wish trip. Sancho's riveting tale of the diagnosis and treatment of his son's illness takes us deep inside the workings of the immune system, and into the radically innovative treatment used to repair it. Ultimately Sebastian is saved with a stem cell transplant using discarded umbilical cord blood, a groundbreaking technique pioneered and practiced by the medical wizards at Duke University Hospital. Deeply researched and darkly humorous, this is a wrenching tale with a triumphant ending.

The Rare and the Beautiful

Author : Cressida Connolly
Publisher : Fourth Estate
ISBN 13 : 9780007241033
Total Pages : 297 pages
Book Rating : 4.2/5 (41 download)

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Book Synopsis The Rare and the Beautiful by : Cressida Connolly

Download or read book The Rare and the Beautiful written by Cressida Connolly and published by Fourth Estate. This book was released on 2006 with total page 297 pages. Available in PDF, EPUB and Kindle. Book excerpt: A biography of a family, and a portrait of an era.

Rare Leadership

Author : Marcus Warner
Publisher : Moody Publishers
ISBN 13 : 0802494439
Total Pages : 240 pages
Book Rating : 4.8/5 (24 download)

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Book Synopsis Rare Leadership by : Marcus Warner

Download or read book Rare Leadership written by Marcus Warner and published by Moody Publishers. This book was released on 2016-03-18 with total page 240 pages. Available in PDF, EPUB and Kindle. Book excerpt: Revive your leadership. Grow healthy teams. See great results. Healthy teams begin with healthy leaders, and at the heart of this dynamic is emotional maturity—the quality the greatest leaders possess. Combining solid theology, cutting-edge brain science, and decades of counseling and consulting experience, Rare Leadership shows you how to take your leadership and team to the next level. It will equip you to: Cultivate emotional maturity in yourself and others Develop the four habits of R.A.R.E. leaders Promote a strong group identity Keep relationships bigger than problems Increase productivity through trust, joy, and engagement Whether you are burnt out or just looking to improve, when you prioritize people and lead from a secure identity, you’ll be amazed at the freedom you feel and the results you see. You can lead from a healthy place, respond rather than react, and build the team of your dreams. If you want to take your organization to the next level, it starts with you. Read Rare Leadership and be equipped to lead joy-filled, emotionally mature, relationally connected teams.

Rare Diseases and Orphan Drugs

Author : Jules J. Berman
Publisher : Academic Press
ISBN 13 : 0124200095
Total Pages : 400 pages
Book Rating : 4.1/5 (242 download)

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Book Synopsis Rare Diseases and Orphan Drugs by : Jules J. Berman

Download or read book Rare Diseases and Orphan Drugs written by Jules J. Berman and published by Academic Press. This book was released on 2014-05-26 with total page 400 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare Diseases and Orphan Drugs shows that much of what we now know about common diseases has been achieved by studying rare diseases. It proposes that future advances in the prevention, diagnosis, and treatment of common diseases will come as a consequence of our accelerating progress in the field of rare diseases. Understanding the complex steps in the development of common diseases, such as cancer, cardiovascular disease, and metabolic diseases, has proven a difficult problem. Rare diseases, however, are often caused by aberrations of a single gene. In rare diseases, we may study how specific genetic defects can trigger a series of events that lead to the expression of a particular disease. Often, the disease process manifested in a certain rare disease is strikingly similar to the disease process observed in a common disease. This work ties the lessons learned about rare diseases to our understanding of common ones. Chapters covering the number of common diseases are minimized, while rare diseases are introduced as single diseases or as members of diseases classes. After reading this book, readers will appreciate how further research into the rare diseases may lead to new methods for preventing, diagnosing, and treating all diseases, rare or common. Makes rare diseases relevant to clinicians and researchers by tying lessons learned about the rare diseases to our understanding of the common diseases Stresses basic pathologic mechanisms that account for human disease (e.g., disorders of cell development, replication, maintenance, function and structure), that can be understood without prior training in pathology Discusses advanced concepts in molecular biology and genetics in a simple, functional context appropriate for medical trainees and new researchers Offers insights into how further research into rare diseases may lead to new methods for preventing, diagnosing, and treating all diseases.

Orphan

Author : Philip Reilly
Publisher :
ISBN 13 : 9781621821373
Total Pages : 0 pages
Book Rating : 4.8/5 (213 download)

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Book Synopsis Orphan by : Philip Reilly

Download or read book Orphan written by Philip Reilly and published by . This book was released on 2015 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "This book is about the struggle to save the lives of children who, because of a roll of the genetic dice, are born with any one of more than several thousand rare genetic disorders. It recounts the now century long effort of small groups of physicians and scientists to take on some of these genetic diseases. In many cases just a few physician-scie