| | Information Centre for Rare Diseases and Orphan Drugs : |
| |  | (30.8.2010) Rare Diseases Descriptions
A new section Rare Diseases has been added to our site. You can find there useful information about rare diseases and web-database links. The version in Bulgarian language contains also rare diseases description, prepared by ICRDOD consultants. These documents include common synonyms, definition, etiology, clinical aspects, genetic counseling, medical treatment, specialized clinics and patient associations in Bulgaria. |
| | | (26.8.2010) Protest March For a fair chance to our children
On the occasion of the First School Day (15 September) patient associations from the National Alliance of People with Rare Diseases will organise a protest march under the motto "For a fair chance to our children". The initiative aims to draw again the attention of the society and to provoke actions from the state in order to eliminate the discrimination on rare diseases patients' medical treatment. The initiative will begin at 16 o'clock on 17 September 2010 (Friday) from the subway to the "Dom Levski" on Rayko Daskalov street in Plovdiv. Anyone may express its solidarity and support to the people with rare diseases by joining the rally. |
| | | (11.8.2010) 2009 Report on Initiatives and Incentives in the Field of Rare Diseases
The 2009 Report on Initiatives and Incentives in the Field of Rare Diseases, compiled by the Scientific Secretariat of the European Union Committee of Experts on Rare Diseases (EUCERD, formerly the European Commission's Rare Diseases Task Force) is now ready. You can read it here. For further information, please visit EUCERD website. |
| | | (23.7.2010) Review of the access to medicines for rare diseases in Bulgaria
ICRDOD has prepared a review of the access to medicines for rare diseases in Bulgaria. The report contains data for 60 orphan drugs, including the conditions which are treated with them and information about the presence of the medicine in the Positive drug list of Bulgaria and Regulation 34 of 25 November 2005, concerning the procedure of payment from the state budget for the medical treatment of Bulgarian citizens, outside the compulsory health insurance. You can read the review at the Registries & Statistics section. |
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| | About.com Rare Diseases |
| | | (31.8.2010) One Reason to be Grateful for Bedbugs
We all shudder at the thought of a bedbug infestation -- and those of us in cities that have been blanketed with the apple-seed-sized crawlers are dealing with the very real concerns of how to keep them out of our homes (hint: it's extremely difficult). But an article in today's New York Times points to one feature of bedbugs that we all should be very happy about: they do not spread disease. That is, not as far as anyone has been able to tell so far. Researchers have fed the insidious insects blood with the AIDS virus, hepatitis B, and other viruses, and never did the bedbugs transmit the pathogens to their victims. Let's hope they never change! At least in that respect. ... Read Full Post |
| | | (15.7.2010) Dengue Fever Resurfaces in Key West
For the first time in 64 years, there's evidence of a dengue fever outbreak in the continental United States. Last fall, on a tip from a New York resident who came down with the mosquito-spread illness after traveling to Key West, researchers started collecting blood samples from a random selection of residents in the area. They found that 5% of the samples had the dengue fever virus or its antibodies, indicating that about 1,000 Key West residents may well have come into contact with it. ... Read Full Post |
| | | (22.6.2010) Former 76er Manute Bol dies
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| | | (27.5.2010) FDA Approves New Drug for Pompe Disease
The Food and Drug Administration has just approved a new drug to treat those with late-onset Pompe disease. It's called alglucosidase alfa (Lumizyme).
Pompe disease affects between 5,000 and 10,000 people globally. It's a rare lysosomal storage disorder caused by a lack of an enzyme called acid alpha-1,4-glucosidase. This lack leads to a build-up of glycogen, which eventually causes muscle damage, and can be fatal when the respiratory and cardiovascular systems are affected. ... Read Full Post |
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| | About.com Rare Diseases: Most Popular Articles |
| | | (1.1.0001) Multiple Myeloma
Information about multiple myeloma (blood cell cancer), its symptoms, diagnosis, and treatment. |
| | | (1.1.0001) Bone Marrow Transplant
A bone marrow transplant is when special cells (called stem cells) that are normally found in the bone marrow are taken out, filtered, and given back either to the same person or to another person. |
| | | (1.1.0001) Bubonic Plague
Information about bubonic plague, including its symptoms, how it's spread, diagnosis and treatment. |
| | | (1.1.0001) Mad Cow Disease and Humans
Article describes mad cow disease (variant Creutzfeldt-Jakob disease), its symptoms, diagnosis, and treatment. |
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| | About Today |
| | | (1.1.0001) 10 Ways to Prevent Weekend Weight Gain
This weekend, however, I am going to attempt to exercise restraint. Partly because it's better for me, and partly because I don't want to have to buy new pants on Tuesday morning.
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| | | (1.1.0001) 7 Common Weight Loss Myths ... Busted!
My favorite busted myth in this list: Fat is to be avoided. Of course, our Weight Loss expert wasn't talking about cheese when she discussed healthy fats.
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| | | (1.1.0001) Can You Cut Too Many Calories?
Believe it or not, I've done this before. My metabolism did not thank me later.
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| | | (1.1.0001) 10 Ways to Foster a Child's Creativity
It was pretty clear to us that the problem was ours, and that we didn't want to turn it into Mom's. Otherwise, she was liable to cure our boredom with an exciting round of chores, and no one wanted that.
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| | Inspire - NORD Rare Disease Support Community - All posts |
| | | (1.1.0001) Back when everything began..
May 2010 I went in to have a basic arthroscopy and came out with a lateral release on my left knee.. shortly after my knee collapsed and my night mare began. I fell landing on my right hip, just a simple ... |
| | | (1.1.0001) My 1 month old son was born at full term 41 weeks, and his PDA didnt close.
My 6 week old son was born at full term 41 weeks, a perfectly healthy baby boy, and he went to his routine checkup, and they found that he had a heart murmer, so the following day I went in for some tests ... |
| | | (1.1.0001) my baby sister is sick with cancer!
I just received the worst phone call a older sister can get from a baby sister, and when I answered the phone and heard Amanda's voice, I knew something was wrong. Ann has cervical cancer ... |
| | | (1.1.0001) hyperaldosteronism - Inspra Meds
Hi I have been diagnosed with hyperaldosteronism in the UK. I have been on Inspra 50mg for 6 days and my BP has gone up to 180/120. I was wondering if anyone has taken Inspra and how long it took before ... |
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| | National Institutes of Health (NIH) News Releases |
| | | (2.9.2010) NIH-sponsored research yields promising malaria drug candidate
A chemical that rid mice of malaria-causing parasites after a single oral dose
may eventually become a new malaria drug if further tests in animals and people
uphold the promise of early findings. The compound, NITD609, was developed by
an international team of researchers including Elizabeth A. Winzeler, Ph.D.,
a grantee of the National Institute of Allergy and Infectious Diseases (NIAID),
part of the National Institutes of Health. |
| | | (2.9.2010) Lower blood pressure goal benefits African-Americans with chronic kidney disease, protein in the urine
On average, a lower blood pressure goal was no better than the standard blood pressure goal at slowing progression of kidney disease among African-Americans who had chronic kidney disease resulting from high blood pressure, according to results of the African-American Study of Kidney Disease and Hypertension (AASK), the largest and longest study of chronic kidney disease (CKD) in African-Americans. However, the blood pressure goal did benefit people who also had protein in the urine, which is a sign of kidney damage. The study, funded by the National Institutes of Health, appears in the Sept. 2 issue of the New England Journal of Medicine. |
| | | (2.9.2010) New TB Diagnostic Proves Effective, Expedient, Study Finds
A molecular test designed to easily diagnose tuberculosis (TB) and detect a drug-resistant form of the bacterium that causes TB can provide much more specific, sensitive and rapid results than currently available TB diagnostics, according to a new study in the New England Journal of Medicine. In a test involving 1,730 patients with suspected drug-sensitive or multidrug-resistant pulmonary TB, the Xpert MTB/RIF TB test successfully identified 98 percent of all confirmed TB cases and 98 percent of patients with rifampin-resistant bacteria in less than two hours. |
| | | (1.9.2010) NIH awards grants to support biomedical research in space
The National Institutes of Health announced today that it has awarded the first new grants under the Biomedical Research on the International Space Station (BioMed-ISS) initiative, a collaborative effort between NIH and NASA. Using a special microgravity environment that Earth-based laboratories cannot replicate, researchers will explore fundamental questions about important health issues, such as how bones and the immune system get weak. |