News About Clinical Trials — National Organization for Rare Disorders NORD shares information about opportunities to participate in clinical trials so that patients and their physicians may decide whether specific studies are appropriate for them. We do not endorse or recommend participation in any specific clinical trials. The following is a brief sampling of current studies. For more comprehensive information about opportunities to participate in research, go to www.clinicaltrials.gov. Alkaptonuria (AKU) The developAKUre clinical study is evaluating the safety and efficacy of a new drug, Nitisinone, for patients with AKU. AKU patients from the UK and Europe are being sought for participation in the SONIA 2 trial that will assess the long-term suitability of nitisinone for use in AKU patients. Anaplastic Thyroid Cancer For patients with advanced anaplastic thyroid cancer, Plexxikon is sponsoring a clinical trial of an oral investigational drug targeting the cancer microenvironment (cells recruited by the cancer that promote its growth and invasion). Dr.
LANDMARK NORD STUDY CONCLUDES FDA IS FLEXIBLE IN REVIEWING THERAPIES FOR RARE DISEASES — National Organization for Rare Disorders Released at Major Conference, Study Catalogues Flexibility in Orphan Drugs Approved Since 1983 Washington DC, October 11, 2011 – The National Organization for Rare Disorders (NORD) today released a landmark report documenting flexibility in the Food and Drug Administration (FDA) review of potential treatments for patients with rare diseases. Released at the U.S. Conference on Rare Diseases and Orphan Products, the report examined the basis for FDA’s approval of 135 non-cancer “orphan drugs” – those for rare diseases – since the Orphan Drug Act was enacted in 1983 to provide incentives to encourage development of treatments for rare diseases. This is the first study of its kind ever conducted and the first time that there has been a systematic examination of the basis for approval for any category of drug products extending over such a long period of time. The study demonstrates a decades-long pattern of flexibility in FDA review of orphan drugs. Frank J. NORD President and CEO Peter L.
Centro Nazionale Malattie Rare Seguendo questo link salti il contenuto della pagina e vai direttamente alla Mappa del sito a fondo pagina Centro Nazionale Malattie Rare d Responsabile: Domenica Taruscio Le malattie rare Cosa sono le malattie rare? Malattie rare esentate in Italia Elenco ordinato delle patologie e ricerca on line Ho una malattia rara? Il disabile e i suoi diritti Una guida concreta per orientarsi tra agevolazioni, detrazioni, sconti fiscali e altre opportunità Le malattie rare e l'Europa Le informazioni e le iniziative della Commissione Europea.Ulteriori informazioni sul portale ad esse dedicato. Rete Nazionale Malattie Rare Telefono Verde Malattie Rare Il servizio anonimo e gratuito fornisce informazioni su esenzioni, centri di cura, associazioni, sperimentazioni, ricerca, non formulando diagnosi cliniche. Le domande più frequenti rivolte al Centro Nazionale Malattie Rare per ricevere informazioni sulle patologie esenti ticket, i presidi accreditati, le associazioni di pazienti, ecc. In rilievo Appuntamenti d
Hearst Magazines Feds Bolster High Risk Insurance Funds In Two States Short Takes On News & Events By Phil Galewitz December 22nd, 2011, 4:51 PM The federal government this month increased funding to New Hampshire and California to make sure their new high-risk pools that provide coverage to uninsured people with pre-existing condition don’t run out of money before 2014. Because nationwide enrollment has been far less than expected, overall federal funding for the program established under the health overhaul appears plentiful– $5 billion was set aside and less than $500 million has been spent in the first 16 months. But funding allotments for a few states are beginning to run low, largely because the health costs have been higher than expected. Officials in both California and New Hampshire feared they might start running out of funds by early next year. New Hampshire, which was allotted $20 million, was given another $30 million.
Steve Jobs and alternative cancer care Despite questions about Steve Jobs' use of alternative medicine, such treatements have a place in cancer care, writer says. Andrew Weil says he can't say if Steve Job's treatment choices shortened his lifeHe says in his studies he has found no alternative therapy for cancer that is effectiveBut, he says, alternative therapies can help strengthen body during cancer careWeil: Integrative medicine should be essential part of cancer care Editor's note: Andrew Weil is the director of the of the integrative medicine program at the University of Arizona College of Medicine, and Professor of Medicine and Public Health, author of 8 Weeks to Optimum Health, Healthy Aging, and the forthcoming Spontaneous Happiness. He co-edited, with Donald Abrams, MD, a textbook of Integrative Oncology published by Oxford University Press. (CNN) -- Steve Jobs had a long run with a rare form of cancer (a pancreatic neuroendocrine tumor) that is sometimes curable by early surgery. Andrew Weil
Welcome to the Bichon Poo Review Heal Your Heart; Heal Your Life We are all familiar with saying such as “Slow down or you’ll have a heart attack,” or “He died of a broken heart.” Well, it turns out there is some truth in these metaphors. Scientists are now finding out that chronic stress can literally break your heart, while compassion and mindful breathing may help to heal it. Stephen Porges, a psychophysiologist and Professor at the University of Illonois at Chicago has proposed a Polyvagal Theory that ties our unconscious perceptions of threat and safety to heart rate rhythm and the ability to regulate physiological arousal. This theory proposes that the vagus nerve communicates between the brain and the heart and affects human response to threat as well as social engagement and bonding. This theory can explain why negative emotions such as depression , frustration, or hostility may stress the heart, while positive emotions, slow, deep breathing, exercise and social support may calm it. {*style:<b> A smooth heart rhythm can extend life
Texas A&M coach Billy Kennedy in early stages of Parkinson's COLLEGE STATION, Texas (AP) – Texas A&M coach Billy Kennedy said Thursday that he is in the early stages of Parkinson's disease. Kennedy took a leave of absence from the team earlier this month to undergo testing after experiencing neck and shoulder pain for several months that led to an inability to sleep regularly. The tests revealed that Kennedy was in the early stages of Parkinson's disease, a progressive disorder of the nervous system that affects movement. "I am heeding the advice of my doctors and addressing the disease and its symptoms," Kennedy said in a statement. Associate head coach Glynn Cyprien took over when Kennedy took his leave and will continue to be in charge of the team. "We have a good prognosis," Kennedy said. The 47-year-old Kennedy was hired from Murray State in May after Mark Turgeon left to become coach at Maryland. "I fully expect Billy to have a long and illustrious coaching career here … when he is cleared to return to the court," Byrne said.
Health care reform benefit changes in 2011 - Mar. 3 By Parija Kavilanz, senior writerMarch 3, 2011: 6:01 AM ET NEW YORK (CNNMoney) -- Under health care reform, consumers will see several new changes to their insurance coverage this year, the most significant of which affects the nation's 47 million Medicare beneficiaries. Amy Bergner, principal with global benefits consulting firm Mercer, said senior citizens who are also Medicare enrollees will see the biggest effects. "One of the most important changes is how much seniors will now pay for prescription medicines," Bergner said. Here's what you need to know: 50% discount on prescription drugs: On Jan. 1, drugmakers began giving seniors a 50% discount on brand-name prescription medicines filled in the Medicare Part D "coverage gap." When Medicare beneficiaries fall into the coverage gap, also known as the "donut hole," Medicare stops paying for drug coverage and patients can't afford to pay for drugs out-of-pocket. Share this
Pat Summitt, Tennessee women’s basketball coach, diagnosed with Alzheimer’s disease “Are you having trouble with your memory?” friends began asking, puzzled. “Sometimes I draw blanks,” Summitt finally admitted. Her first clue that something was badly wrong came last season, when she drew a blank on what offensive set to call in the heat of a game. “I just felt something was different,” she says. Summitt believed her symptoms were the side effects of a powerful medication she was taking for rheumatoid arthritis, an excruciating condition that she has quietly suffered with since 2006. Denial was followed by anger. Last week Washington D.C. attorney Robert B. Full disclosure: It is the measure of Summitt’s large-heartedness that she could call any of a half-dozen people her closest friend. “It is what it is,” she said. ‘You will always be our coach’ Last Thursday, Summitt, Barnett, and her 20-year-old son Tyler, who is a junior at the University of Tennessee, met with Chancellor Jimmy Cheek and Athletic Director Joan Cronan to inform them of her condition. Role reversal
Democrats.org SMASH SMA Occupational Outlook Handbook, 2010-11 Edition Funeral Directors Funeral directors, also called morticians and undertakers, manage funeral homes and arrange the details of a funeral. view profile » Insurance Underwriters Insurance underwriters decide whether to provide insurance and under what terms. They evaluate insurance applications and determine coverage amounts and premiums. Computer and Information Research Scientists Computer and information research scientists invent and design new technology and find new uses for existing technology. Mathematicians Mathematicians use high-level mathematics and technology to develop new mathematical principles, understand relationships between existing principles, and solve real-world problems. Atmospheric Scientists, Including Meteorologists Atmospheric scientists study weather, climate, and other aspects of the atmosphere. Economists Economists study the production and distribution of resources, goods, and services. Health Educators Court Reporters Dietitians and Nutritionists Audiologists Electricians