American organisations and networks
1. Genetic Alliance
Genetic Alliance is world’s leading US based non-profit health advocacy organisation, which includes in its network more than 1200 disease-specific advocacy organisations, universities, government agencies, private companies and public policy organisations. The organisation was established by Joan O. Weiss in 1986, Washington DC. Genetic Alliance has established a number of programs aimed to improve the understanding of genetics and advocacy, to advance important campaigns and to institute strong networks. Genetic Alliance is managing a Biobank since 2003.
Current programs running at Genetic Alliance include:
• Access to Credible Genetics Resources Network
• Consumer Focused Newborn Screening
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Orphanet
The National Institute of Health and Medical Research, France (INSERM) has initiated Orphanet database. It is currently updated by 38 countries of European consortium, coordinated by France. It is published in English, German, French, Italian, Spanish and Portuguese which is freely accessible to both physicians and patients. Orphanet provides services which include inventory, classification and encyclopaedia of rare disease, inventory of orphan drugs, OrphaNews, Report Series and diagnostic tools searchable by sign and symptoms.
2. European Platform for Patient Organisations, Science and Industry (EPPOSI)
EPPOSI is an international association committed to support healthcare policymaking. It is an advisory committee for pharmaceutical industries, academic and patient organisation to interact and exchange knowledge. The members of EPPOSI include five industrial associations and 18 large pharmaceutical and biotechnology companies. Through advanced innovation programs, EPPOSI research is focused on chronic conditions management (AIP-CCM), health technology assessment (AIP-HTA), innovation in healthcare (AIP-INNO) and rare diseases
Improvements in health care and life sciences are an important source of gains in health and longevity globally. The development of innovative pharmaceutical products plays a critical role in ensuring these continued gains. To encourage the continued development of new drugs, economic incentives are essential. These incentives are principally provided through direct and indirect government funding, intellectual property laws, and other policies that favor innovation. Without such incentives, private corporations, which bring to market the vast majority of new drugs, would be less able to assume the risks and costs necessary to continue their research and development (R&D). In the United States, government action has focused on creating the environment that would best encourage further innovation and yield a constant flow of new and innovative medicines to the market. The goal has been to ensure that consumers would benefit both from technological breakthroughs and the competition that further innovation generates. The United States also relies on a strong generic pharmaceutical industry to create added competitive pressure to lower drug prices. Recent action by the Administration and Congress has accelerated the flow of generic medicines to the market for precisely that reason. By contrast, in the Organization for Economic Cooperation and
Capital punishment exist in today’s society as citizens of the United States should we have the right to take an individual life.
Each product must go through a progression of approval, clinical trials, and post market observation protocols in order to ensure its safety and effectiveness. Stages in the development of medical technologies are scientific background and development of idea for a product, product development, approval, and distribution, diffusion, adoption and utilization of the product. Health care professional, patients, families, and policy makers all struggle to understand how health is affected by behavior, economic and social
Pearson, MD, MSc who is the Founder and President ICER tried to build a non-profit organization concerning about the evaluation of the value of medical tests, treatment, and healthcare delivery system innovations that improve the patient care and controls cost. Beside Dr. Steven as a leader, there are 19 other members for ICER. ICER members’ role focusing on that all stakeholders have a good knowledge of the drug under study, how effectiveness the drug is, and helping patients, doctors, and everyone else in the healthcare system to know the treatment options available.
A Genetic Counselor is someone who provides information and support to those who have birth defects, genetic disorders or at risk of such conditions. They may also look for treatment of disorders, or conduct research on the cause or they may work to help the families and individuals understand the condition they or others may have. To be a genetic counselor you have to have completed master's degree program in genetic counseling. Students should prepare with undergraduate courses in biology, chemistry, genetics, and psychology. Some the top schools to go to outside of Virginia for genetic counseling majors is Johns Hopkins University, Northwestern University, or Boston University School of Medicine. Though schools that are in state and are
The sequencing of the human genome has a new approach to health care in regards to promotion, maintenance, and treatment. Genetic research is defined as a new approach to a better understanding of the genetic components of common diseases: Cancer, diabetes, stroke, and creating new gene-based technologies for screening, prevention, diagnosis, and treatment of both rare and common diseases. Nurses are a main aspect within the first line of care, and therefore will contribute fully in genetic-based and genomic-based practice activities such as collecting family history, obtaining informed consent for genetic testing, and administering gene-based therapies. Lea, D, (January 31, 2008). My paper is based on an article Genomics in the public
According to Berger (2014), a patient can receive genetic counseling to learn more about a condition/disease he or she may possibly be at risk for and may possibly pass onto their children (p. 88). A genetic counselor is educated and trained to describe to the patient the condition/disease, the benefits and drawbacks for taking the genetic test, the test results’ meaning, and how having the condition could affect their future children (Berger, 2014, p. 88). Then, the patient – not the genetic counselor – makes decisions about his or her next steps with respect to all the information they have been provided by the genetic counselor (Berger, 2014, p. 89).
The society in Brave New World is different and abnormal because the society people know and live in today is quite far from the one described in the novel. Much of the book is dedicated to genetic engineering that is much more advanced than anything tried in today’s society.
We have the Bill of Rights, what we need is a bill of responsibilities. ~ Bill Maher. Everyone in the world has responsibilities, and as Americans we have our responsibilities as well. America is a land of freedom, by following our responsibilities we can keep the nation as great as it is. If we do not, however we will become far less free than we are now. We just take advantage of the rights we are given and we definitely do not stop to think about how they got there, and how many people had to die to give them to us.
genetic testing, everything has changed. She notes that clinicians now have the ability to diagnose, treat, and monitor a patient’s illnesses or disease progression in an entirely different manner. This is a far cry from the old medical model of responding to a disease (or defect) only after it appears, and then prescribing the recommended medication or intervention. These genetic medical advances sound miraculous and promising, but the ability to test, screen and provide early intervention does not come without many major ethical dilemmas.
Research shows that the average person can have hundreds of errors in their genetic code. Though these errors tend to leave the individual unharmed, many still suffer the consequences of faulty genes. Some of these consequences can be mild, such as color blindness. Other disorders, however, can cause extreme suffering for those affected. Genetic disorders such as Hemophilia, Progeria, Cystic Fibrosis, etc. cause a lifetime of misery for hundreds of thousands of people around the world. I want to be a part of the movement that not only improves the lives of those with genetic disorders but also works towards eliminating genetic disorders as a whole.
The Starry Night, 1889 is a painting by Vincent Van Gogh while he was in an Asylum at Saint Remy de Provence. It portrays the view of the sunrise and the small village from the east facing window in Van Gogh’s room.
Genetic and rare diseases are a huge medical and economic burden on not only developing countries like my home country India, but also in the more developed western hemisphere. Growing up, I was fortunate to be surrounded by friends a majority of which were medically trained professionals, and I became increasingly aware of the importance of such diseases that are chronic and severely debilitating if not always truly lethal. International and national agencies continue to look for opportunities to strengthen preventive strategies that can cut this burden.
In the past three decades, scientists have learned how to mix and match characteristics among unrelated creatures by moving genes from one creature to another. This is called “genetic engineering.” Genetic Engineering is prematurely applied to food production. There are estimates that food output must increase by 60 percent over the next 25 years to keep up with demand. Thus, the result of scientist genetically altering plants for more consumption. The two most common methods for gene transfer are biological and electromechanical. “Early experiments all involved changing DNA using bacterial vectors”(Randerson, 2001). Through other advances scientists proclaim how they can improve the human gene pool. All humans have
Congenital disease has been defined as “the art and science of the responsible and realistic application of health and disease-related genetics and genomics knowledge and technologies in human populations (communities) to the benefit of individual persons. Congenital disease is the disease occurs at birth or even before birth. According to WHO, it is estimated 276 000 babies die within 4 weeks of birth every year, worldwide, from congenital anomalies. Congenital anomalies can result in long-term disability, which may have significant impacts on individuals, families, health-care systems and societies. The most common severe congenital anomalies are heart defects, neural tube defects and Down syndrome. Although congenital anomalies may be genetic,