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.

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.

Drawn from the extensive database of Guide to Reference, this up-to-date resource provides an annotated list of print and electronic biomedical and health-related reference sources, including internet resources and digital image collections. Readers will find relevant research, clinical, and consumer health information resources in such areas as Medicine Psychiatry Bioethics Consumer health and health care Pharmacology and pharmaceutical sciences Dentistry Public health Medical jurisprudence International and global health Guide to Reference entries are selected and annotated by an editorial team of top reference librarians and are used internationally as a go-to source for identifying information as well as training reference professionals. Library staff answering health queries as well as library users undertaking research on their own will find this an invaluable resource.

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.

A primary concern of rare disease diagnosis is the lack of accurate information that may lead to delayed interventions, administering inaccurate treatments, and social consequences. Health communication continues to be one-way and rely on the expertise from the health practitioner. In such a broad spectrum of rare diseases, patients may find it difficult to obtain timely information, accurate diagnosis, and appropriate treatments, surgeries, medications, or psychological counseling in their own countries. The use of information and communication technologies can create new communication channels that address this lack of knowledge. Communicating Rare Diseases and Disorders in the Digital Age is an essential reference source that uses computer-mediated communication to improve patient knowledge when afflicted or dealing with rare health conditions. Featuring research on topics such as support networking, eHealth management, and social computing, this book is ideally designed for health practitioners, physicians, patients, medical administrators, nurses, surgeons, infectious disease educators, hospital directors, world health organizations, academicians, students, and researchers seeking coverage on current advances in health communication, computer science, and epidemiology.

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

A resource guide to assistance and aid for those with renal failure. Find resources to assist with such things as transportation, medical bills, prescription drugs, independent living, income assistance and much more. While some resources listed here also offer goods and services to those with other disabilities, others may only offer their goods and services to those with renal failure or renal disease. Each have their own focus and requirements.

Patient-centered medicine is not an illness-centered, a physician-centered, or a hospital-centered medicine approach. In this book, it is aimed at presenting an approach to patient-centered medicine from the beginning of life to the end of life. As indicated by W. Osler, "It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has." In our day, if the physicians and healthcare professionals could consider more than the diseased organ and provide healthcare by comforting the patients by respecting their values, beliefs, needs, and preferences; informing them and their relatives at every stage; and comforting the patients physically by controlling the pain and relieving their worries and fears, patients obeying the rules of physicians would become patients with high adaptation and participation to the treatment.

Packed with original color illustrations and videos, Interdisciplinary Cleft Care: Global Perspectives draws from the rich national and international relationships between the Global Smile Foundation and world experts in cleft care to provide comprehensive, clear, and user-friendly content for all cleft care professionals. This text is designed to be an inclusive resource that addresses the educational needs of all cleft care providers, from novice learners looking to develop their area’s first multidisciplinary cleft team to seasoned specialists looking to improve their outcomes. While most other educational cleft care books on treatments and techniques are relevant in high-resource settings, they may not be applicable in low and middle-income countries where orofacial clefting is most common. Interdisciplinary Cleft Care: Global Perspectives details multiple treatment modalities and surgical techniques that can be applied in low, medium, and high-resource settings alike for all key challenges in cleft care. This book has a team-based framework with chapters that address pertinent topics in cleft care by national and international authorities on the subject from plastic surgery, facial plastic surgery, pediatric otolaryngology, oral maxillofacial surgery, speech-language pathology, dentistry, orthodontics, psychology, and more. This text also brings attention to special topics often ill addressed in traditional cleft care resources, including psychosocial issues, safety and preparedness in low-resource settings, and guidance for building a multidisciplinary cleft care team where needed. The book includes access to 60 high-quality surgical videos to support the techniques reviewed in the chapters.