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One Reason to be Grateful for Bedbugs

Tue, 31 Aug 2010 12:20:37 +0000

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.

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Dengue Fever Resurfaces in Key West

Thu, 15 Jul 2010 11:02:18 +0000

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.

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Former 76er Manute Bol dies

Tue, 22 Jun 2010 12:13:46 +0000

FDA Approves New Drug for Pompe Disease

Thu, 27 May 2010 16:44:23 +0000

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.

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FDA pushes for cures for orphan diseases

Wed, 10 Mar 2010 13:01:53 +0000

In a push to find cures or at least better treatment for rare diseases, the Food and Drug Administration is giving pharmaceutical companies an incentive to create therapies for so-called orphan diseases - those that affect fewer than 200,000 Americans.

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Girl with "mermaid syndrome" dies at age 10

Wed, 28 Oct 2009 12:37:57 +0000

Shiloh Pepin, who was born with sirenomelia, or "mermaid syndrome," has died at the age of 10. She passed away last Friday in Maine.

Sirenomelia is a condition in which one's legs are fused together from the waist down. Pepin did not have any genital organs or a large intestine. Most children born with sirenomelia die soon after birth.

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Folotyn Gets OK for Rare Lymphoma Treatment

Mon, 28 Sep 2009 10:36:44 +0000

Sabril approved by FDA to treat infantile spasms

Tue, 01 Sep 2009 08:13:11 +0000

On August 21, 2009, the U.S. Food and Drug Administration (FDA) approved Sabril (vigabatrin) to treat infantile spasms in children ages 1 month to 2 years. Infantile spasms are a type of seizure disorder, often part of West syndrome, in which the infant suddenly bends forward at the waist and the body, arms, and legs stiffen. These spasms last a few seconds and occur in clusters of anywhere from 2 to 100 spasms at a time. Some infants have dozens of these clusters of spasms in a day.

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Osteogenesis Imperfecta

Sun, 30 Aug 2009 08:27:37 +0000

BPNA Rare Disorders Symposium September 29, 2009

Thu, 27 Aug 2009 08:32:55 +0000

The 8th European Pediatric Neurology Society Congress is being held September 30 - October 3, 2009, in Harrogate, England. A Rare Disorders Symposium will be held on September 29 prior to the Congress. This Symposium, being organized by Professor Brian Neville, will cover topics such as:

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