Download or read book The Voice of 12 000 Patients Experiences and Expectations of Rare Disease Patients on Diagnosis and Care in Europe written by and published by EURORDIS - Rare Diseases Eu. This book was released on 2009 with total page 325 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book The voice of rare disease patients written by K. Franklin and published by . This book was released on 2014 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
Download or read book THE VOICE OF 12 000 PATIENTS EXPERIENCES AND EXPECTATIONS OF RARE DISEASE PATIENTS ON DIAGNOSIS AND CARE IN EUROPE written by C. NOURISSIER and published by . This book was released on 2009 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 675 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.
Download or read book Communicating Rare Diseases and Disorders in the Digital Age written by Costa, Liliana Vale and published by IGI Global. This book was released on 2020-01-03 with total page 412 pages. Available in PDF, EPUB and Kindle. Book excerpt: 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.
Download or read book Prevention Diagnosis and Treatment of Rare Disorders written by Marc Marie Dooms and published by Frontiers Media SA. This book was released on 2022-11-10 with total page 285 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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.
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.
Download or read book Health and Ethics written by Laura Elena Pacifici Noja and published by tab edizioni. This book was released on 2020-12-10 with total page 280 pages. Available in PDF, EPUB and Kindle. Book excerpt: The book Health and Ethics stems from the need to divulge the knowledge and emotions shared by students and professors during the first lessons of Moral Philosophy, led by Professors Pacifici Noja and Boccanelli. A spontaneous bond which had arisen amongst the two counterparts, led to an innovative model of creative interaction. The students, divided into 17 groups, had to choose among different themes suggested by the professors, according to their preferences and personal interests. The themes range among many fields, but they have one purpose in common: highlighting and studying the different relationships bonded between the physician and the patient. Therefore, the book was designed to be an important resource for the comprehension and the understanding of both the difficulties and the duties a physician needs to face, but also of the satisfaction and happiness which can arise from them.
Download or read book Research Anthology on Public Health Services Policies and Education written by Management Association, Information Resources and published by IGI Global. This book was released on 2021-04-16 with total page 840 pages. Available in PDF, EPUB and Kindle. Book excerpt: Public health has become an essential area of focus in terms of the way it operates, the services offered, policies, and more. Maintaining an effective public health system and infrastructure, updated and useful policies, and health literacy are primary concerns. A critical analysis of public healthcare policy and services is critical to accommodate the changing health demands of the global population. Through a deeper understanding of the way public health services are offered, a look into policymaking and current policies in healthcare, and the way health literacy and health education are promoted, the current state and future of public health are acknowledged. The Research Anthology on Public Health Services, Policies, and Education presents a view of public health through an analysis of healthcare services and delivery; policies in terms of policymaking, ethics, and governance; as well as the way society is educated on public health affairs. The chapters will cover a wide range of issues such as healthcare policy, health literacy, healthcare reform, accessibility, public welfare, and more. This book is essential for public health officials, government officials, policymakers, teachers, medical professionals, health agencies and organizations, professionals, researchers, academics, practitioners, and students interested in the current state of public health and the improvement of public health services and policies for the future.
Download or read book Advocacy in Neurology written by Wolfgang Grisold and published by Oxford University Press. This book was released on 2019-02-21 with total page 427 pages. Available in PDF, EPUB and Kindle. Book excerpt: Advocacy is a broad term that covers activities aimed at increasing attention, awareness, information, nursing, treatment, and support to improve the outcome of patients. These actions can be focused directly towards patients or indirectly via third parties. Although advocacy is present in all medical specialties, neurology in particular finds itself in need of strong advocacy tools as the diagnosis, treatment, long-term care and associated resource, and social issues have become increasingly complex. While some physicians implicitly or explicitly act as advocates, there is a lack of holistic research in order to clarify the meaning of advocacy along with concrete methods and strategies. Advocacy in Neurology provides an integrated approach to the concept of advocacy in neurology. Structured in five sections, the book begins by explaining the term "advocacy" in general before elaborating on the areas of interest within neurology. The text goes on to offer concrete strategies and tools for clinicians to deploy advocacy in their daily work, and then discusses specific neurological diseases to point out and explain where advocacy is, or could be, beneficial. The book ends with an outlook, presentation of results, and an ending conclusion. Advocacy in Neurology offers a practical perspective on advocacy activities in neurology, aiming to show when and why they are important for neurology.
Download or read book Rare Disease Advocacy Groups and Their Significance in Diagnosis Management Treatment and Prevention of Rare Diseases written by Qurratulain Hasan and published by . This book was released on 2020 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: Rare diseases are those diseases that are not seen frequently in a population. There are about 7000 rare diseases that have been identified worldwide, and 80% of them are caused by genetic changes. Since a small number of individuals are affected with rare diseases, most clinicians are not aware of such diseases, and thus, they remain undiagnosed and untreated. Awareness regarding such diseases is essential to train clinicians to diagnose individuals affected with these disorders and to develop National/International Registries, which will serve to give information about the disease prevalence, its natural course, treatment, and management options available, to the medical fraternity. Patient advocacy groups play a remarkable and unique role in forming the collective voice of individuals living with rare diseases. They help in the identification, diagnosis, management, treatment, and prevention of such diseases. Advocacy Groups form collaborative partnerships with scientists studying such rare diseases, clinicians managing these diseases, pharmaceutical companies developing drugs, and Government officials overseeing and policy makers implementing medical regulatory processes. Thus, advocacy groups play a key role in helping patients and families with rare diseases.
Download or read book Public Health and Informatics written by J. Mantas and published by IOS Press. This book was released on 2021-07 with total page 1184 pages. Available in PDF, EPUB and Kindle. Book excerpt: For several years now, both eHealth applications and digitalization have been seen as fundamental to the new era of health informatics and public health. The current pandemic situation has also highlighted the importance of medical informatics for the scientific process of evidence-based reasoning and decision making at all levels of healthcare. This book presents the accepted full papers, short papers, and poster papers delivered as part of the 31st Medical Informatics in Europe Conference (MIE 2021), held virtually from 29-31 May 2021. MIE 2021 was originally due to be held in Athens, Greece, but due to the continuing pandemic situation, the conference was held as a virtual event. The 261 papers included here are grouped into 7 chapters: biomedical data, tools and methods; supporting care delivery; health and prevention; precision medicine and public health; human factors and citizen centered digital health; ethics, legal and societal aspects; and posters. Providing a state-of-the-art overview of medical informatics from around the world, the book will be of interest to all those working with eHealth applications and digitalization to improve the delivery of healthcare today.
Download or read book The Knowledgeable Patient written by Sophie Hill and published by John Wiley & Sons. This book was released on 2011-08-24 with total page 244 pages. Available in PDF, EPUB and Kindle. Book excerpt: Learn how to place communication and participation at the heart of evidence-based healthcare The Knowledgeable Patient: Communication and Participation in Health sits at the forefront of the challenging, changing 21st century landscape. The 'knowledgeable patient' as an individual can take many forms: patient, family carer, consumer advocate, or member of the public interested in health issues. In each of these roles, knowledgeable patients interact with health professionals by asking questions about the evidence for treatment, seeking support, exchanging views, and contributing experiences and new ideas on how to improve the health system. Drawing from several research paradigms, The Knowledgeable Patient is an essential guide to a new era of complex healthcare. Integrating consumer stories and evidence from systematic reviews, it examines key communication and participation issues in a range of contexts, including: surgery safe medicine use chronic disease self management the complexity of multimorbidity notification of rare disease risk. The Knowledgeable Patient is international in scope with researched examples spanning living in the community, health service treatment, governance, and policy making. It provides health professionals with new ideas, concepts, evidence, and practical tools to understand the central role of communication and participation to a well-functioning health system. It is an ideal reference for undergraduate and postgraduate students studying the health sciences. Watch a video about The Knowledgeable Patient: Communication and Participation in Health from the author, Sophie Hill: bit.ly/xNYCqG
Download or read book Handbook Integrated Care written by Volker Amelung and published by Springer Nature. This book was released on 2021-07-12 with total page 1212 pages. Available in PDF, EPUB and Kindle. Book excerpt: This handbook shares profound insights into the main principles and concepts of integrated care. It offers a multi-disciplinary perspective with a focus on patient orientation, efficiency, and quality by applying widely recognized management approaches to the field of healthcare. The handbook also highlights international best practices and shows how integrated care can work in various health systems. In the majority of health systems around the world, the delivery of healthcare and social care is characterised by fragmentation and complexity. Consequently, much of the recent international discussion in the fields of health policy and health management has focused on the topic of integrated care. “Integrated” acknowledges the complexity of patients’ needs and aims to meet them by taking into account both health and social care aspects. Changing and improving processes in a coordinated way is at the heart of this approach. The second edition offers new chapters on people-centredness, complexity theories and evaluation methods, additional management tools and a wealth of experiences from different countries and localities. It is essential reading both for health policymakers seeking inspiration for legislation and for practitioners involved in the management of public health services who want to learn from good practice.
Download or read book The Importance of Genetic Literacy and Education in Medicine written by Nina Pereza and published by Frontiers Media SA. This book was released on 2022-05-24 with total page 91 pages. Available in PDF, EPUB and Kindle. Book excerpt:
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 307 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.
