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NORD - National Organization for Rare Disorders, Inc.

NORD - National Organization for Rare Disorders, Inc.
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The Jack Miller Center for Peripheral Neuropathy at The Universi JAHA: Journal of the American Heart Association 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.

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

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. Frank J. NORD President and CEO Peter L. The report was released October 11 in Washington DC during the U.S. Mary Dunkle

A :: news This new edition of the guidelines has been edited by R. Norman Harden, MD, Director, Center for Pain Studies, Addison Chair, Rehabilitation Institute of Chicago; Associate Professor, Physical Medicine & Rehabilitation, Northwestern University, Feinberg School of Medicine, Chicago, IL. These guidelines have been written for a professional audience. Funding was provided by grants from the National Organization of Rare Disorders, Purdue Pharma L.P., The Celgene Corporation, and the Medtronic Foundation. Contents Cover and Table of Contents Contributing Authors Introduction and Diagnostic Considerations Interdisciplinary Management Pharmacotherapy Psychological Interventions Interventional Therapies Appendices: Treatment Algorithm, Pharmacotherapy Guide, Psychologial Intervention Photo Gallery

Unified Medical Language System UMLS consists of Knowledge Sources (databases) and a set of software tools. The UMLS was designed and is maintained by the US National Library of Medicine, is updated quarterly and may be used for free. The project was initiated in 1986 by Donald A. B. Lindberg, M.D., then and current Director of the Library of Medicine. Purpose and applications[edit] The number of biomedical resources available to researchers is enormous. Licensing[edit] Users of the system are required to sign a "UMLS agreement" and file brief annual usage reports. Knowledge Sources[edit] [edit] The Metathesaurus forms the base of the UMLS and comprises over 1 million biomedical concepts and 5 million concept names, all of which stem from the over 100 incorporated controlled vocabularies and classification systems. The scope of the Metathesaurus is determined by the scope of the source vocabularies. Semantic Network[edit] SPECIALIST Lexicon[edit] Entries may be one-word or multiple-word terms. (Browne et al., 2000) [3]

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.

GeneTests 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. (CNN) -- Steve Jobs had a long run with a rare form of cancer (a pancreatic neuroendocrine tumor) that is sometimes curable by early surgery. In the course of these investigations, I have looked at many alternative cancer treatments and found none of them to be effective. Andrew Weil

State of New Jersey - Motor Vehicle Commission Individuals who meet the medical qualifications are eligible to choose from one of three options: One set of wheelchair symbol license plates One person with a disability placard One set of plates and one placard Qualified applicants can receive one set of wheelchair symbol license plates for a vehicle registered either to the qualified person with a disability or to one family member who provides them with transportation. See the Qualifications page for detailed information. The person with a disability placard will authorize you to park any vehicle in a wheelchair symbol parking space as long as the person designated on the “Person with a Disability Identification Card” is in the vehicle and has their ID card with them. The "Person with a Disability Identification Card" must be in the vehicle or with the qualified person at all times as proof of disability.

Adaptogens, Herbals | Drug, OTCs & Herbals | Medscape Reference About Medscape Reference Medscape's clinical reference is the most authoritative and accessible point-of-care medical reference for physicians and healthcare professionals, available online and via all major mobile devices. All content is free. The clinical information represents the expertise and practical knowledge of top physicians and pharmacists from leading academic medical centers in the United States and worldwide. The topics provided are comprehensive and span more than 30 medical specialties, covering: Diseases and Conditions More than 6000 evidence-based and physician-reviewed disease and condition articles are organized to rapidly and comprehensively answer clinical questions and to provide in-depth information in support of diagnosis, treatment, and other clinical decision-making. Procedures Anatomy More than 100 anatomy articles feature clinical images and diagrams of the human body's major systems and organs. Drug Monographs Drug Interaction Checker Formulary Information

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. According to Porges, our response systems to threat exist in a layered hierarchy that is functional for survival. The middle layer is a more sophisticated vagal system, unique to mammals. At the highest level of the nervous system, when our brains detect that the environment is safe, the vagus will shut down the fight or flight response and instead, activate a more recently developed system, unique to humans. {*style:<b>

Texas A&amp;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. "We have begun a long-term treatment plan and recovery. 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. Senior guard Dash Harris said he spoke with Kennedy on Thursday and that he "looks well."

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