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| | Orphan Products: Hope for People With Rare Diseases |
 | | AMN is a milder form of adrenoleukodystrophy (ALD), one of a group of genetically determined progressive disorders known as "leukodystrophies" that affect the brain, spinal cord and peripheral nerves. | | | The goal of the program is to encourage clinical development of products for use in rare diseases or conditions. | | | Eager for more information, Brazeal and her husband Ron were among the founders of the ULF--a voluntary health organization dedicated to providing patients who have these diseases, and their families, with specific information. |
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http://www.fda.gov/fdac/features/2003/603_orphan.html
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| | Degos Disease |
| | Degos disease, or malignant atrophic papulosis, is a rare obstructive vasculopathy of unknown origin, characterized by distinctive skin lesions, visceral involvement, and an unfavorable outcome. | | | We describe a 56-year-old patient with this rare disorder whose death was the result of intestinal involvement. | | | Many papules demonstrated the classic porcelain-white centers characteristic of Degos' disease, but others exhibited different clinical morphologies that corresponded to the evolutionary stages of papules originally described by Degos. |
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http://www.thedoctorsdoctor.com/diseases/degos_disease.htm
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| | OrphaNews Europe : the newsletter of the Rare Disease Task Force |
| | Specifically, the focus for rare disease research in FP7 will be on Europe-wide studies of natural history, pathophysiology, and on development of preventive, diagnostic and therapeutic interventions. | | | The network was set up in 2004 after the need for a European level platform for the exchange of ideas and experiences to enhance awareness for rare chromosome disorders in the public, political and scientific arenas became apparent during a study of the experiences of representatives of support groups active across Europe. | | | This project, led by the International Patient Organisation for Primary Immunodeficiencies (IPOPI), is centred around a Consensus Conference on Primary Immunodeficiency (PID) involving delegates and experts from clinical immunology, PID care, public health, genetics, EU/national agencies and health ministries, academic centres, public health laboratories, professional organisations and patient groups. |
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http://www.orpha.net/actor/EuropaNews/2005/051020.html
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| | Questions about rare lung disease: 1/00 |
| | Each year, patients will be given chest X-rays, lung function tests, exercise tests to measure lung capacity and to check for shortness of breath, and a questionnaire to measure how the disease is affecting their quality of life. | | | Genes undoubtedly play a role, Raffin said, but further research is hampered not only by the rarity of patients, but also by the lack of an animal model of the disease that could be studied in the laboratory. | | | Stanford was chosen as one of the six sites because Thomas Raffin, MD, professor and chief of the division of pulmonary and critical care medicine, is one of the few LAM experts in the world. |
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http://news-service.stanford.edu/news/2000/january19/lam-119.html
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| | Eurordis - 04. Get help for a rare disease |
| | Patients and their families are able to exchange information with others who are living with the same disease. | | | This organisation, based in the United States, will answer questions from the general public, including patients and their families, health care professionals and biomedical researchers. |
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http://www.eurordis.org/article.php3?id_article=505
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| | Rare Disease Endemic in South America Is Model for Studying Autoimmunity |
| | The disease can be limited to patches on the skin but its more deadly systemic version can spread across the skin and, preliminary data indicates, to other organs such as the heart and brain. | | | A group of men living amid the gold mines and disappearing jungles of northeastern Colombia, is giving a Medical College of Georgia scientist unprecedented access to study how the wrong combination of genetics and environment cause the body to turn on itself. | | | “When you are doing epidemiological studies, you need to find the source of the disease,” she says. |
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http://www.mcg.edu/news/2004NewsRel/AbreuVelez.html
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| | Rocky Mountain News: Health & fitness |
| | Unless there's a drastic change in the way research is organized, the only hope for people like Farber is that one of the few researchers exploring her disease will stumble on a way to arrest or even cure it before it destroys her lungs. | | | It is a tremendous challenge for us as we try to hold ourselves together, to create hope where there is little, and to keep our work and family lives intact. | | | Also, I am lucky to be married to a loving, dedicated and well-educated husband able to gracefully and effectively navigate the medical system. |
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http://www.rockymountainnews.com/drmn/health/article/0,2777,DRMN_23956_4291441,00.html
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| | Rare Pediatric Disease Database |
| | Ultrasonography (a technique that uses the reflection of sound waves to provide a two-dimensional image of deep structures within the body) is the imaging study of choice for revealing the large, irregularly dilated bile ducts typical of Caroli disease. | | | If there is significant bleeding from the elevated blood pressure in the liver (portal hypertension), a surgical procedure can be performed to divert the liver blood flow. | | | This website provides information on current clinical research, patient testimonials, and links to additional information on Caroli Disease. |
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http://www.madisonsfoundation.org/content/3/1/display.asp?did=446
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| | Stargardt's Disease - Rare Disorders - Medstudents |
| | There are a few measures that should be adopted and that will help the patients solving some of the problems that they face. | | | The degeneration process begin early, normally at 7 years old, being the foveal reflexes alteration with granulous aspect of RPE the first manifestation. | | | The yellowish flacks can be observed around the macula characterizing the fundus flavomaculatus. |
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http://www.medstudents.com.br/raredi/raredi4.htm
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| | National Organization for Rare Disorders |
| | NORD is offering one-year, renewable fellowships to assist physicians who desire to establish careers in lysosomal storage diseases clinical medicine. | | | Your gifts are the life blood that helps us bring light to those affected by rare disorders. | | | Browse our database of used medical equipment or submit an ad so that others may contact you regarding the used equipment you would like to sell or give to needy people. |
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http://event.expoexchange.com/_media/commerce/TradeShow_1/radE61C2.htm
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| | Office of Rare Diseases |
| | Information for patients and their families, health care professionals, biomedical researchers, and the general public. | | | Aplastic Anemia & MDS International Foundation (AA&MDSIF) Conference: On Bone Marrow Disease: Diagnostic and Treatment Issues for Hematology and Oncology Nurses | | | NIH Pain Consortium Symposium: Highlights in Pain Research, Bethesda, MD, April 16-17 |
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http://rarediseases.info.nih.gov
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| | Do You Have a Rare Disease? - Yale-New Haven Hospital |
| | Participating in a clinical trial may be one way to receive the most advanced care. | | | You should seek prompt medical care for any specific health issues and consult your physician before starting a new fitness regimen. | | | For many rare diseases there may not be cures, but treatment of symptoms can help. |
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http://www.ynhh.org/choice/raredisease.html
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| | BBC News UK Dudley Moore has rare brain disease |
| | Dr Thomas Galski, who has been working with Mr Moore at the Kessler Institute for Rehabilitation in West Orange, New Jersey, said the actor was undergoing physical and speech therapy, as well as experimental drug therapy. | | | He has now started to experience vision problems as the disease progresses. | | | Actor and comedian Dudley Moore is suffering from a rare brain disease related to Parkinson's disease, he has revealed. |
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http://news.bbc.co.uk/1/hi/uk/461376.stm
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| | Gluten-Sensitive Enteropathy, No Longer a Rare Disease |
| | The physician must form a partnership with the patient as in other conditions. | | | The natural history of gluten sensitivity: defining, refining and re-defining. | | | Such patients are often misclassified as having more common illnesses such as chronic fatigue syndrome, fibromyalgia, or irritable bowel disorder. |
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http://www.uams.edu/celiac/review/GSE1.htm
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| | Important brain finding results from boy's rare, fatal disease |
| | During the years that Torres treated Nathan, research at the medical center was growing dramatically. | | | The work points out another function of astrocytes, says neuropathologist James Powers, M.D., another Rochester doctor who has studied the disease. | | | As Nathan's illness progressed, the family discussed how it might help other families and patients coping with VWM, and the family decided to allow the study of some of Nathan's brain cells for research purposes. |
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http://www.eurekalert.org/pub_releases/2005-04/uorm-ibf042505.php
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| | Graves' Disease |
| | A doctor must give these medicines to you. | | | Congestive heart failure can develop rapidly and lead to death. | | | This is a common disease that affects 2 percent of all women at some time in their lives. |
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http://www.4woman.gov/faq/graves.htm
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| | Infants With Rare Genetic Disease Saved by Cord Blood Stem Cells |
| | "The diseases may be uncommon, but the cost to the child, their family and to society at large is enormous when one considers the burden of caring for a severely disabled child," said Joanne Kurtzberg, senior author of the study. | | | The program is dedicated to tracking the natural history and the effects of new therapies in children with rare diseases. | | | These disorders include more than 45 rare diseases, such as Krabbe disease, Hurler syndrome, Adrenoleukodystrophy, Metachromatic Leukodystrophy, Tay-Sachs disease, Sandhoff disease and a host of others. |
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http://www.dukenews.duke.edu/2005/05/cordblood_print.htm
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| | Castleman's Disease Homepage |
| | Most often, they occur in the chest, stomach, and/or neck (i.e., localized disease [hyaline-vascular type]). | | | To provide research information, clinical points of contact, and cancer treatment facilities to those patients of "Castleman's Disease" and the patients families. | | | Castleman's Disease is a rare disorder characterized by non-cancerous (benign) growths (tumors) that may develop in the lymph node tissue throughout the body (i.e., systemic disease [plasma cell type]). |
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http://www.castlemans.org
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| | Other Sources of Rare Disease/Orphan Product Information |
| | The mission of the Pharmaceutical Research and Manufacturers of America is to help the research-based pharmaceutical industry successfully meet its goal of discovering, developing, and bringing to market medicines to improve human health, patient satisfaction, and the quality of life around the world, as well as to reduce the overall cost of healthcare. | | | The goals of the CHDCT are to bring about greater awareness and understanding of heritable disorders of connective tissue in medical professions and in the public at large; to encourage teaching in the schools, to train health practitioners to help identify, diagnose, and treat heritable connective tissue disorders; and to foster research. | | | The goals of ORD are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today |
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http://www.fda.gov/orphan/rdid
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| | Rare disease numbers higher; funding lower - The Clarion-Ledger |
| | The real success story for researching rare diseases can be found in the Orphan Drug Act of 1983, which provides incentives for companies to develop those drugs. | | | Harvard researcher Dr. Virginia Kimonis, whose success in studying rare diseases has led to an NIH grant for her lab, said studying rare diseases helps scientists better understand the body's mechanisms, providing insight into more common disorders. | | | For instance, she said, HIV research could aid research into inflammatory and infectious diseases, cancer, and auto-immune diseases like arthritis and lupus. |
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http://www.clarionledger.com/apps/pbcs.dll/article?AID=/20040822/SPECIAL04/408220384
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| | NZORD Rare Disease Information |
| | This page provides links to explanations of these crucial aspects of our human condition, and to resources that explain how inherited genetic diseases are transmitted from one generation to the next. | | | Often they are written for health professionals and researchers, but many are also suitable for patients and their families. | | | They provide links to many other sites that have disease information available. |
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http://www.nzord.org.nz/internal.asp?CategoryID=100005
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| | NORD - National Organization for Rare Disorders, Inc. |
| | If you have a question about a rare disease, available resources, or caring for a loved one, you can call or write to NORD's genetic counselor or registered nurse at any time. | | | In 1989, a Congressional committee released a report on the ways in which having a rare disease affects patients and their families. | | | Read about more than 2,000 patient organizations and other sources of help. |
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http://www.rarediseases.org
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| | Researchers Identify Genetic Cause of Rare Eye Disease in Utah Family |
| | After reviewing the original study, we decided this would be great family to follow up on using today's genetic research techniques. | | | Officially, patients with the disease are described as suffering from optic atrophy (optic nerve degeneration), deafness, ptosis (drooping of the upper eyelid), and ophthalmoplegia (loss of eye movement). | | | The disease, which is informally being called Beehive Syndrome because of its connection to Utah (the Beehive State), causes both vision and hearing loss in patients. |
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http://www.medicalnewstoday.com/medicalnews.php?newsid=16336
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| | Gene discovery sheds light on causes of rare disease, cancer |
| | Many who have FA eventually develop acute myeloid leukemia and are prone to head and neck, gastrointestinal, and other cancers. | | | "FA is a disease that appears to be the result of a breakdown in vital DNA repair mechanisms," said Weidong Wang, Ph.D., a senior investigator in the NIA's Laboratory of Genetics, who led the study. | | | Like many rare, inherited diseases, understanding this gene's role in the development of FA provides insights into other medical problems -- in this case, age-related conditions including ovarian and pancreatic cancers, as well as leukemia, the researchers said. |
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http://www.eurekalert.org/pub_releases/2005-08/nioa-gds081805.php
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| | Moffitt > Moffitt Is Key Player in National Institutes of Health’s New $51 Million Rare Disease Clinical Research ... |
| | The grant is “designed to promote investigation of biology, determine true incidence and foster development of novel therapeutics for orphan hematologic diseases such as myelodysplastic syndromes, aplastic anemia and others,” explains Alan List, M.D., Leader of Moffitt’s Malignant Hematology Program. | | | "With a collaborative approach, the network will focus on identifying biomarkers for disease risk, disease severity and activity, and clinical outcome, while encouraging development of new approaches to the diagnosis, prevention, and treatment of rare diseases." | | | Some of the other rare diseases to be addressed are Prader-Willi syndrome, periodic paralysis, hereditary idiopathic pulmonary fibrosis and vasculitis disorders. |
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http://www.moffitt.usf.edu/about_moffitt/press/press_releases/2003/20031209.asp
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| | Herald Sun: Rare genetic disease discovered (archived) |
| | The researchers say the syndrome comprises such a broad array of problems because the defect covers a very fundamental type of calcium channel. | | | Their report says only 17 children are known to have had the disease and seven of these are still living. | | | AN article in scientific journal says researchers have discovered a rare disease caused by a gene mutation that often kills children before the age of two. |
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http://www.heraldsun.news.com.au/common/story_page/0,5478,10937315^1702,00.html
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| | The Family Village / Library / Addison's Disease |
| | Blood pressure is low and falls further when a person is standing, producing lightheadedness. | | | Although Addison's disease is considered a rare disease, it is estimated that at least 10,000 individuals in the United States have this condition (this is probably an underestimation). | | | There may be a darkening of the skin that may look like an inappropriate tan on a person who feels ill. |
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http://www.familyvillage.wisc.edu/lib_addisons.html
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| | Gaucher Disease - Rare Disorders - Medstudents |
| | These patients can have some relief of symptoms. | | | Enzyme Replacement therapy is a relatively new treatment that can stop and reverse the symptoms of Gaucher Disease and improves quality of life. | | | Philippe Charles Ernest Gaucher (go-shay) was the first to describe in France, 1882, the clinical syndrome which liver and spleen were enlarged with anemia and bone pain in a woman patient. |
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http://www.medstudents.com.br/raredi/raredi2.htm
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| | Rare disease - Wikipedia, the free encyclopedia |
| | Other rare diseases are the result of infections and allergies or due to degenerative and proliferative causes. | | | This is so because, given its rarety, less severe illness are just not identified as such. | | | Rare diseases, including those of genetic origin, are life-threatening or chronically debilitating diseases which are of such low prevalence that special combined efforts are needed to address them. |
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http://en.wikipedia.org/wiki/Rare_disease
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| | DukeMedNews Muscle-Targeted Gene Therapy Reverses Rare Muscular Dystrophy in Mice |
| | The findings suggest that such an approach should be considered as a potential gene therapy strategy for Pompe disease patients, the researchers report in a forthcoming issue of Molecular Therapy (now available online). | | | Despite the early success of enzyme replacement therapy for some children with Pompe disease, a need for gene therapy remains, he added. | | | Muscular dystrophies include many genetic diseases, all of which are characterized by progressive weakness and degeneration of the skeletal muscles which control movement. |
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http://www.dukemednews.org/news/article.php?id=8469
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| | Rare Disease Therapeutics |
| | FDA Approves Drug to Treat Rare Pediatric Liver Disease | | | Nitisinone should be prescribed by physicians experienced in treating hereditary tyrosinemia typeI, as the correct dose must be adjusted for each patient according to specific biochemical tests. | | | Orphan products are developed to treat rare diseases, or conditions that affect fewer than 200,000 people in the U.S. The Orphan Drug Act provides a seven-year period of exclusive marketing to the first sponsor who obtains marketing approval for a designated orphan drug. |
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http://www.raretx.com/january2002.html
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| | Times Community Newspapers - Fairfax / Annandale - 11/22/2005 - Battling a rare disease |
| | White, like other adult Pompe patients, has what is considered a milder form of the disease. | | | Pompe patients suffer progressive muscle weakness and loss of muscle tissue over time. | | | I have only about 30 percent of a normal person's respiratory capacity," said White, adding that the disease has also weakened the muscles in his arms and legs. |
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http://www.timescommunity.com/site/tab5.cfm?newsid=15624521&BRD=2553&PAG=461&dept_id=511688&rfi=6
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| | rare disease |
| | The goals of ORD are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today. | | | Low-cost research (compared to some similar services), info and referrals for treating rare diseases and disorders. | | | The site also has information on research programs. |
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http://www.heartsandminds.org/self/links/raredisease.htm
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| | A rare disease treated with Placenta blood infusion containing Stem Cells |
| | This fact was made use by the doctors to treat a rare disease known as Chronic Granulomatous Disease in a child. | | | Most often CGD is inherited as an X-linked recessive pattern, although in about 40 percent of patients the disease is inherited with an autosomal recessive pattern. | | | Andrew Cant, director of the children's bone marrow transplant unit claim it is the first time the treatment has been used. |
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http://www.manbir-online.com/news/cgd.htm
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| | Rare Diseases Clinical Research Network |
| | Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment. | | | The Rare Diseases Clinical Research Network was created to facilitate collaboration among experts in many different types of rare diseases. | | | You have reached the home page for the Rare Diseases Clinical Research Network (RDCRN). |
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http://rarediseasesnetwork.epi.usf.edu
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| | NN/LM PSR Latitudes Article - NIH's New Rare Disease Information Center |
| | More information is available on the Center's web site at http://rarediseases.info.nih.gov including definitions, a list of rare diseases, patient support groups, patient travel and lodging, and research and clinical trials. | | | A rare disease is defined as one that has a prevalence of less than 200,000 affected individuals in the USA. | | | MEDLINEplus also has information on Rare Diseases, including a link to the Office of Rare Diseases and to information on orphan drugs from the Food and Drug Administration. |
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http://nnlm.gov/psr/lat/v11n2/rare_disease.html
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| | Sloan-Kettering - Mutation in DKC1 Gene Can Cause Rare Aging Disease & Cancer |
| | Telomerase deficiency may nevertheless exacerbate the disease and needs further study. | | | Dyskerin is thought to be involved in the regulation of ribosomal function and interacts with the RNA component of telomerase, which is essential in the regulation of telomere length. | | | Dyskeratosis Congenita is an extremely rare, fatal X-linked recessive disease that results in premature aging, severe anemia due to bone marrow failure, and dyskeratosis of the nails, skin hyperpigmentation, and cancer. |
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http://www.mskcc.org/mskcc/html/12318.cfm
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| | BBC NEWS Science/Nature Rare disease genes found |
| | Chromosome 14 is also the location for the faulty genes responsible for Niemann-Pick disease, a very rare but deadly condition. | | | The research could help scientists understand why some people are more likely to develop certain rare conditions including early-onset Alzheimer's. | | | Developing treatments, like chromosome-specific drugs that could repair the damage in the genetic code, are a long way off but this work could help doctors screen for these genetic conditions. |
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http://news.bbc.co.uk/1/hi/sci/tech/2617305.stm
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| | JHMN:MEDICAL UPDATES:Test Confirms a Rare Blood Disease |
| | Blood volume also increases—a double whammy because that masks the disease from the doctor while putting the patient at a higher risk of blood clots and stroke. | | | He sees a fair number of patients who’ve suffered from overly aggressive treatment such as chemotherapy, but maintains that keeping a close watch on the blood volume works best. | | | In a recent article in The New England Journal of Medicine, he reported that patients with the disease apparently lack normal receptors for a growth factor called thrombopoietin. |
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http://www.hopkinsmedicine.org/hmn/W99/mu_9.html
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| | JS Online: 3 new deaths linked to rare brain disease |
| | The men all died from Creutzfeldt-Jakob disease, a fatal illness thought to be caused by mutant proteins called prions. | | | Indeed, as long ago as 1984, neurologists at Baylor College of Medicine suspected that four deaths, believed to be the result of Creutzfeldt-Jakob disease, were caused by patients eating the brains of wild animals. | | | Two years later, a national study involving more than two dozen Creutzfeldt-Jakob disease patients found that exposure to deer through a hobby such as hunting resulted in as much as a ninefold increased risk for the disease. |
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http://www.jsonline.com/news/state/apr03/132152.asp
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| | Baylor doctors find mutated gene causing rare Stargardt disease |
| | Houston doctors have located the gene that causes a disease responsible for most of the degenerating central vision in children and young adults. | | | Finding the gene will enable doctors to develop a specific test for Stargardt disease, which is frequently confused with other vision problems, Lewis said. | | | Also, understanding the abnormal protein that causes problems in Stargardt disease will help doctors unravel what the normal form of the protein does in a person's eye, he said. |
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http://www.chron.com/content/chronicle/metropolitan/97/03/03/gene.2-0.html
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| | NIH Record-6-16-98--Research on Rare Genetic Disease Leads to Ancestral African Culture |
| | The mouse model of the rare disease AMD was developed by molecular biologist Dr. Nina Raben and colleagues. | | | While conducting clinical studies on the rare muscle disease myositis a few years ago, Plotz, who is chief of NIAMS's Arthritis and Rheumatism Branch, and his group were contacted by a physician from Children's Hospital. | | | Researcher Raben and others have developed a mouse model of the rare disease -- a crucial step toward finding better treatments and perhaps a cure. |
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http://www.nih.gov/news/NIH-Record/06_16_98/story01.htm
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| | The Herald News - News - 04/19/2004 - Mom, son battle rare disease |
| | Besides the diet, there is no other medication, treatment or cure available for Isaiah. | | | Since the disease affects the body’s muscles by starving them of nutrients, it could eventually affect Isaiah’s heart, liver, lungs and other organs. | | | His specific metabolic disease is "extremely rare," according to Nault, making him one of only about 300 known cases in the world. |
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http://www.heraldnews.com/site/news.cfm?newsid=11343233&BRD=1710&PAG=461&dept_id=99784&rfi=6
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| | Oil Fights Rare Disease |
| | The condition causes the breakdown of myelin, the fatty substance that coats and insulates nerve fibers. | | | As a result, 74 percent of the boys showed no signs of disease progression, the researchers found. | | | A treatment called Lorenzo's Oil can prevent the onset of a rare but devastating neurological disease in young boys, researchers say. |
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http://www.ediets.com/news/article.cfm?cmi=1275728&cid=28
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| | Rare Disease Therapeutics |
| | The company works closely with the FDA Office of Orphan Product Development, National Organization of Rare Disorders, patient advocacy groups, and the National Institutes of Health to identify the unmet needs of patients with rare disorders and potential products to meet these needs. |
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http://www.raretx.com
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| | Central Nervous System Vasculitis Foundation, Inc. |
| | Diagnosing CNSV is a clinical challenge because it is a syndrome, not a specific disease; and can be easily misdiagnosed as Lupus and/or Multiple Sclerosis, or any number of other diseases. | | | We hope that by delivering information to doctors, researchers and those newly diagnosed, we can bring this disease to the forefront of the minds of those who need to know more. | | | This Foundation has been created by those who know first hand the devastating effects of this rare disease. |
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http://www.cnsvfinc.org
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| | Third rare brain disease death, Idaho |
| | Idaho officials believe a naturally occurring form of the disease is responsible for the three cases and may be involved in an additional four deaths this year. | | | The results bring to three the number of confirmed cases this year in Idaho of Creutzfeldt-Jakob Disease, an incurable illness involving a malformed protein that kills brain cells. | | | TEST results confirm a rare brain-wasting illness similar to mad cow disease claimed the life of a 53 year-old northern Idaho woman earlier this month, state health officials said. |
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http://discuss.agonist.org/yabbse/index.php?board=6;action=display;threadid=23715
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