Nord Guide To Rare Disorders

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NORD Guide to Rare Disorders

Author : National Organization for Rare Disorders
Publisher : Lippincott Williams & Wilkins
ISBN 13 : 9780781730631
Total Pages : 982 pages
Book Rating : 4.7/5 (36 download)

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Book Synopsis NORD Guide to Rare Disorders by : National Organization for Rare Disorders

Download or read book NORD Guide to Rare Disorders written by National Organization for Rare Disorders and published by Lippincott Williams & Wilkins. This book was released on 2003 with total page 982 pages. Available in PDF, EPUB and Kindle. Book excerpt: NORD Guide to Rare Disorders is a comprehensive, practical, authoritative guide to the diagnosis and management of more than 800 rare diseases. The diseases are discussed in a uniform, easy-to-follow format--a brief description, signs and symptoms, etiology, related disorders, epidemiology, standard treatment, investigational treatment, resources, and references.The book includes a complete directory of orphan drugs, a full-color atlas of visual diagnostic signs, and a Master Resource List of support groups and helpful organizations. An index of symptoms and key words offers physicians valuable assistance in finding the information they need quickly.

Physicians' Guide to Rare Diseases

Author : Jess G. Thoene
Publisher : Dowden Publishing
ISBN 13 :
Total Pages : 1056 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Physicians' Guide to Rare Diseases by : Jess G. Thoene

Download or read book Physicians' Guide to Rare Diseases written by Jess G. Thoene and published by Dowden Publishing. This book was released on 1995 with total page 1056 pages. Available in PDF, EPUB and Kindle. Book excerpt: This classic reference, now with almost 900 disease descriptions, is edited by nationally known pediatrician Jess G. Thoene, M.D. & provides a quick, organized approach to identifying puzzling & unusual symptoms, giving patients the opportunity for early diagnosis & treatment. Special features include: * A full color atlas of visual clues, cross referenced to disease listings. * Thirteen separate specialty sections with an expert overview to introduce each section. Eminent clinicians from the outstanding research centers in rare diseases give you the current status of research & practical approaches to diagnosis & therapy of the rare diseases in that specialty. * Full reference to more than 250 orphan drugs. Each drug is cross referenced to the appropriate disease description. * Clear language for the Layperson. Though written for physicians, the descriptions of diseases, symptoms & treatments are clear & understandable for patients, educators & others outside the medical profession. Each disease description provides symptomatology, etiology, affected population & a comparison of related disorders. Each disease description contains a list of other resources to consult: voluntary agencies, units of the National Institutes of Health, research centers around the country, etc. Addresses & phone numbers are provided in a central reference. Library Journal: "...PHYSICIAN'S GUIDE...is recommended for medical collections & public libraries with consumer health collections."

Physicians' Guide to Rare Diseases

Author : Jess G. Thoene
Publisher : Dowden Publishing
ISBN 13 :
Total Pages : 1230 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Physicians' Guide to Rare Diseases by : Jess G. Thoene

Download or read book Physicians' Guide to Rare Diseases written by Jess G. Thoene and published by Dowden Publishing. This book was released on 1992 with total page 1230 pages. Available in PDF, EPUB and Kindle. Book excerpt: Guide to diagnosing and treating rare diseases (one affecting fewer than 200,000 Americans,).

Rare Diseases and Orphan Products

Author : Institute of Medicine
Publisher : National Academies Press
ISBN 13 : 0309158060
Total Pages : 442 pages
Book Rating : 4.3/5 (91 download)

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Book Synopsis Rare Diseases and Orphan Products by : Institute of Medicine

Download or read book Rare Diseases and Orphan Products written by Institute of Medicine and published by National Academies Press. This book was released on 2011-04-03 with total page 442 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare diseases collectively affect millions of Americans of all ages, but developing drugs and medical devices to prevent, diagnose, and treat these conditions is challenging. The Institute of Medicine (IOM) recommends implementing an integrated national strategy to promote rare diseases research and product development.

The Complete Directory for People with Rare Disorders

Author : National Organization for Rare Disorders
Publisher : Sedgwick Press
ISBN 13 : 9781891482182
Total Pages : 0 pages
Book Rating : 4.4/5 (821 download)

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Book Synopsis The Complete Directory for People with Rare Disorders by : National Organization for Rare Disorders

Download or read book The Complete Directory for People with Rare Disorders written by National Organization for Rare Disorders and published by Sedgwick Press. This book was released on 2002 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: This reference for lay readers and health care professionals presents information on disorders affecting fewer than 200,000 people in the U.S. at any one time. Each of the more than 1,100 entries describes the characteristics, causes, and symptoms of a particular disorder. The extensively cross-referenced volume also features profiles of 680 disease specific organizations as well as 629 umbrella organizations and 77 government agencies. Annotation copyrighted by Book News, Inc., Portland, OR

Registries for Evaluating Patient Outcomes

Author : Agency for Healthcare Research and Quality/AHRQ
Publisher : Government Printing Office
ISBN 13 : 1587634333
Total Pages : 396 pages
Book Rating : 4.5/5 (876 download)

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Book Synopsis Registries for Evaluating Patient Outcomes by : Agency for Healthcare Research and Quality/AHRQ

Download or read book Registries for Evaluating Patient Outcomes written by Agency for Healthcare Research and Quality/AHRQ and published by Government Printing Office. This book was released on 2014-04-01 with total page 396 pages. Available in PDF, EPUB and Kindle. Book excerpt: This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

NORD Compendium of Rare Diseases and Disorders

Author : National Organization for Rare Disorders
Publisher :
ISBN 13 : 9780913113417
Total Pages : 893 pages
Book Rating : 4.1/5 (134 download)

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Book Synopsis NORD Compendium of Rare Diseases and Disorders by : National Organization for Rare Disorders

Download or read book NORD Compendium of Rare Diseases and Disorders written by National Organization for Rare Disorders and published by . This book was released on 2008 with total page 893 pages. Available in PDF, EPUB and Kindle. Book excerpt: A unique compendium providing comprehensive information on the diagnosis and management of over 1,000 rare diseases and disorders. This fully revised and expanded NORD Compendium of Rare Diseases and Disorders is the most comprehensive and authoritative resource of its kind. The Compendium provides a wealth of quick-reference information and data on more than 1,100 rare diseases and more than 1,100 organizations from signs, symptoms, and etiology to support groups, researchers, and treatments.The book is an invaluable diagnostic tool for physicians in the early identification of rare diseases, for researchers on genetic disorders, for non-profit organizations, and for patients who can often go years with proper diagnosis. While rare or orphan diseases are defined as those affecting fewer than 200,000 people in the United States, more than 25 million Americans are actually suffering from one of them. Due to the passage of the landmark Orphan Drug Act of 1983, together with the work of the National Organization for Rare Diseases, there is heightened awareness of and interest in these conditions among physicians, drug discovery researchers, government officials, and the health insurance industry. The FDA has approved 288 drugs and therapies to treat rare diseases, and over 1,400 products are in development and being tested for future approval since the Orphan Drug Act legislation was passed. An essential reference for ALL Libraries: Medical physician and hospital reference and research Government research, support, and funding Academic research and education Industry development of new drugs and therapies Public patient information, advocacy, and support.

Rare Disease Information Directory

Author :
Publisher :
ISBN 13 :
Total Pages : 2 pages
Book Rating : 4.3/5 (121 download)

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Book Synopsis Rare Disease Information Directory by :

Download or read book Rare Disease Information Directory written by and published by . This book was released on 1995 with total page 2 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Orphan Drugs and Rare Diseases

Author : David C Pryde
Publisher : Royal Society of Chemistry
ISBN 13 : 1849738068
Total Pages : 488 pages
Book Rating : 4.8/5 (497 download)

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Book Synopsis Orphan Drugs and Rare Diseases by : David C Pryde

Download or read book Orphan Drugs and Rare Diseases written by David C Pryde and published by Royal Society of Chemistry. This book was released on 2014 with total page 488 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides an up-to-date monograph on the drug discovery and regulatory elements of therapeutics used to treat rare or "orphan" diseases.

Rare Disease Drug Development

Author : Raymond A. Huml
Publisher : Springer Nature
ISBN 13 : 3030786056
Total Pages : 418 pages
Book Rating : 4.0/5 (37 download)

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Book Synopsis Rare Disease Drug Development by : Raymond A. Huml

Download or read book Rare Disease Drug Development written by Raymond A. Huml and published by Springer Nature. This book was released on 2021-11-08 with total page 418 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides a broad overview of rare disease drug development. It offers unique insights from various perspectives, including third-party capital providers, caregivers, patient advocacy groups, drug development professionals, marketing and commercial experts, and patients. A unique reference, the book begins with narratives on the many challenges faced by rare disease patient and their caregivers. Subsequent chapters underscore the critical, multidimensional role of patient advocacy groups and the novel approaches to related clinical trials, investment decisions, and the optimization of rare disease registries. The book addresses various rare disease drug development processes by disciplines such as oncology, hematology, pediatrics, and gene therapy. Chapters then address the operational aspects of drug development, including approval processes, development accelerations, and market access strategies. The book concludes with reflections on the authors' case for real-world data and evidence generation in orphan medicinal drug development. Rare Disease Drug Development is an expertly written text optimized for biopharmaceutical R&D experts, commercial experts, third-party capital providers, patient advocacy groups, patients, and caregivers.

Rare Diseases

Author : Mani T. Valarmathi
Publisher : BoD – Books on Demand
ISBN 13 : 1839629304
Total Pages : 152 pages
Book Rating : 4.8/5 (396 download)

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Book Synopsis Rare Diseases by : Mani T. Valarmathi

Download or read book Rare Diseases written by Mani T. Valarmathi and published by BoD – Books on Demand. This book was released on 2021-09-22 with total page 152 pages. Available in PDF, EPUB and Kindle. Book excerpt: A rare disease is any disease or condition that affects a small percentage of the population. Many rare conditions are life-threatening or chronically debilitating, and unfortunately do not have appropriate treatments, rendering them incurable. In recent years, there has been substantial development in the area of rare disease research and its clinical applications, for instance, rare disease biology and genomics, epidemiology and preventions, early detection and screening, and diagnosis and treatment. In this context, this book consolidates the recent advances in rare disease biology and therapeutics, covering a wide spectrum of interrelated topics, and disseminates this essential knowledge in a comprehensible way to a greater scientific and clinical audience as well as patients, caregivers, and drug and device manufacturers, especially to support rare disease product development. Chapters cover such diseases as Felty’s syndrome, Löfgren’s syndrome, mesothelioma, epidermolysis bullosa, and more. This book is a valuable resource not only for medical and allied health students but also for researchers, clinical and nurse geneticists, genetic counselors, and physician assistants.

Waardenburg Syndrome

Author : Alice Kahn
Publisher : Plural Publishing
ISBN 13 : 1597567620
Total Pages : 151 pages
Book Rating : 4.5/5 (975 download)

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Book Synopsis Waardenburg Syndrome by : Alice Kahn

Download or read book Waardenburg Syndrome written by Alice Kahn and published by Plural Publishing. This book was released on 2006-06-01 with total page 151 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Rare Diseases Epidemiology: Update and Overview

Author : Manuel Posada de la Paz
Publisher : Springer
ISBN 13 : 3319671448
Total Pages : 667 pages
Book Rating : 4.3/5 (196 download)

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Book Synopsis Rare Diseases Epidemiology: Update and Overview by : Manuel Posada de la Paz

Download or read book Rare Diseases Epidemiology: Update and Overview written by Manuel Posada de la Paz and published by Springer. This book was released on 2017-12-06 with total page 667 pages. Available in PDF, EPUB and Kindle. Book excerpt: The fields of rare diseases research and orphan products development continue to expand with more products in research and development status. In recent years, the role of the patient advocacy groups has evolved into a research partner with the academic research community and the bio-pharmaceutical industry. Unique approaches to research and development require epidemiological data not previously available to assist in protocol study design and patient recruitment for clinical trials required by regulatory agencies prior to approval for access by patents and practicing physicians.

Rare Diseases in the Age of Health 2.0

Author : Rajeev K. Bali
Publisher : Springer Science & Business Media
ISBN 13 : 3642386431
Total Pages : 292 pages
Book Rating : 4.6/5 (423 download)

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Book Synopsis Rare Diseases in the Age of Health 2.0 by : Rajeev K. Bali

Download or read book Rare Diseases in the Age of Health 2.0 written by Rajeev K. Bali and published by Springer Science & Business Media. This book was released on 2013-10-21 with total page 292 pages. Available in PDF, EPUB and Kindle. Book excerpt: This text focuses on various factors associated with orphan diseases and the influence and role of health information technologies. Orphan diseases have not been adopted by the pharmaceutical industry because they provide little financial incentive to treat or prevent it. It is estimated that 6,000-7,000 orphan diseases exist today; as medical knowledge continues to expand, this number is likely to become much greater. The book highlights the opportunities and challenges in this increasingly important area. The book explores new avenues which are opened by information technologies and Health 2.0, and highlights also economic opportunities of orphan disease medicine. The editors of this new book have international experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy.

Pulmonary Hypertension

Author : Gail Boyer Hayes
Publisher :
ISBN 13 : 9780975898727
Total Pages : 346 pages
Book Rating : 4.8/5 (987 download)

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Book Synopsis Pulmonary Hypertension by : Gail Boyer Hayes

Download or read book Pulmonary Hypertension written by Gail Boyer Hayes and published by . This book was released on 2013-07-15 with total page 346 pages. Available in PDF, EPUB and Kindle. Book excerpt: Fifth Edition, 2013 Revision. Pulmonary Hypertension: A Patient's Survival Guide serves as a soup-to-nuts resource book covering many of the questions patients and their loved ones might have about living with pulmonary hypertension. The book (350+ pages) includes topics like the mechanics of PH, the latest treatments, patient care and lifestyle issues.

Understanding Genetics

Author : Genetic Alliance
Publisher : Lulu.com
ISBN 13 : 0982162219
Total Pages : 104 pages
Book Rating : 4.9/5 (821 download)

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Book Synopsis Understanding Genetics by : Genetic Alliance

Download or read book Understanding Genetics written by Genetic Alliance and published by Lulu.com. This book was released on 2009 with total page 104 pages. Available in PDF, EPUB and Kindle. Book excerpt: The purpose of this manual is to provide an educational genetics resource for individuals, families, and health professionals in the New York - Mid-Atlantic region and increase awareness of specialty care in genetics. The manual begins with a basic introduction to genetics concepts, followed by a description of the different types and applications of genetic tests. It also provides information about diagnosis of genetic disease, family history, newborn screening, and genetic counseling. Resources are included to assist in patient care, patient and professional education, and identification of specialty genetics services within the New York - Mid-Atlantic region. At the end of each section, a list of references is provided for additional information. Appendices can be copied for reference and offered to patients. These take-home resources are critical to helping both providers and patients understand some of the basic concepts and applications of genetics and genomics.

Inheritance

Author : Sharon Moalem
Publisher : Grand Central Publishing
ISBN 13 : 1455549452
Total Pages : 210 pages
Book Rating : 4.4/5 (555 download)

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Book Synopsis Inheritance by : Sharon Moalem

Download or read book Inheritance written by Sharon Moalem and published by Grand Central Publishing. This book was released on 2014-04-15 with total page 210 pages. Available in PDF, EPUB and Kindle. Book excerpt: Award-winning physician and New York Times bestselling author Sharon Moalem, MD, PhD, reveals how genetic breakthroughs are completely transforming our understanding of both the world and our lives. Inheritance Conventional wisdom dictates that our genetic destiny is fixed at conception. But Dr. Moalem's groundbreaking book shows us that the human genome is far more fluid and fascinating than your ninth grade biology teacher ever imagined. By bringing us to the bedside of his unique and complex patients, he masterfully demonstrates what rare genetic conditions can teach us all about our own health and well-being. In the brave new world we're rapidly rocketing into, genetic knowledge has become absolutely crucial. Inheritance provides an indispensable roadmap for this journey by teaching you: -Why you may have recovered from the psychological trauma caused by childhood bullying-but your genes may remain scarred for life. -How fructose is the sugar that makes fruits sweet-but if you have certain genes, consuming it can buy you a one-way trip to the coroner's office. -Why ingesting common painkillers is like dosing yourself repeatedly with morphine-if you have a certain set of genes. -How insurance companies legally use your genetic data to predict the risk of disability for you and your children-and how that impacts the coverage decisions they make for your family. -How to have the single most important conversation with your doctor-one that can save your life. And finally: -Why people with rare genetic conditions hold the keys to medical problems affecting millions. In this trailblazing book, Dr. Moalem employs his wide-ranging and entertaining interdisciplinary approach to science and medicine-- explaining how art, history, superheroes, sex workers, and sports stars all help us understand the impact of our lives on our genes, and our genes on our lives. Inheritance will profoundly alter how you view your genes, your health--and your life.