viernes, 28 de febrero de 2014

EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe



PATIENTS, ORGANISATIONS, SERVICES
Read about living with a rare disease and the services available
NoRo, Creer and Frambu Resource Centres launch common Rare Disease Day message online! Learn more about these services

Living with Atypical Hemolytic Uremic Syndrome Poll - Atypical Hemolytic Uremic Syn. (aHUS) community - RareConnect

Living with Atypical Hemolytic Uremic Syndrome Poll - Atypical Hemolytic Uremic Syn. (aHUS) community - RareConnect



RARECONNECT
Online Communities for Rare Disease Patients
RareConnect launches a poll for Atypical Hemolytic Uremic Syndrome on Rare Disease Day!
RareConnect

Rare Disease Day 2014: Participants in over 80 countries Join Together for Better Care!

Rare Disease Day 2014: Participants in over 80 countries Join Together for Better Care!



Rare Disease Day 2014: Participants in over 80 countries Join Together for Better Care!

Rare Disease Day activitiesToday is our day. 28 February 2014. Rare Disease Day 2014. Let the world know! There are many ways you can share the news that Rare Disease Day is TODAY!
A multitude of activities and events are already unfolding: a television interview in Kenya; a Fun Play Day in Lebanon; an informational awareness-raising campaign in Paraguay; a march in Austria; an auction in Canada; a photo exhibit in China; a seminar in India – the list goes on  and on – all the way around the world as thousands of participants from over 80 countries Join Together for Better Careon Rare Disease Day 2014!

Find out what’s happening near you!
Events around the world


Louise Taylor, Communications and Development Writer, EURORDIS
Page created: 28/02/2014
Page last updated: 28/02/2014

AIDS.gov Blog Update

AIDS.gov Blog Update



AIDS.gov Blog Update

AIDS.gov Blog for U.S. Dept. of Health & Human Services.
This information has recently been updated, and is now available.
02/28/2014 09:00 AM EST

Many HIV/AIDS organizations, including AIDS United , receive grants from the federal government for the programs we develop and implement that are helping us to bring about the end of HIV/AIDS in the United States and around the world. Without these federal funds, many of our community’s critical, life-saving programs would not exist or be drastically...

Diagnosing Concussion: MedlinePlus Health News Video

Diagnosing Concussion: MedlinePlus Health News Video





02/27/2014 09:45 AM EST

Source: HealthDay - Video
Related MedlinePlus Pages: Concussion, Sports Injuries

A Better Test for Down Syndrome?: MedlinePlus

A Better Test for Down Syndrome?: MedlinePlus

A service of the U.S. National Library of Medicine
From the National Institutes of HealthNational Institutes of Health








A Better Test for Down Syndrome?

New gene-based screen for chromosomal disorders is more accurate than current methods, study says
Wednesday, February 26, 2014
HealthDay news image
WEDNESDAY, Feb. 26, 2014 (HealthDay News) -- A new test that examines fetal DNA from a mother's blood is more accurate at spotting chromosomal abnormalities such as Down syndrome than standard tests offered to pregnant women, a new study indicates.
Scientists found that the blood test, known as cell-free DNA, performed up to 10 times better than other noninvasive tests currently used to screen for "aneuploidy" -- one or more missing chromosomes that can signal conditions such as Down or Edwards syndromes. Both can cause intellectual and physical disabilities. Infants born with Edwards syndrome rarely live beyond one year.
"We had suspected the DNA test would perform well, but what was needed was this head-to-head comparison with the current standard of care," said study author Dr. Diana Bianchi, executive director of the Mother Infant Research Institute at Tufts Medical Center in Boston. "The cell-free DNA has a much lower false positive rate, which means fewer women will be alarmed unnecessarily and fewer will have to go to a genetic counselor or have an invasive procedure" to determine if their baby has a chromosomal defect.
The study, funded by Illumine Inc., the San Diego manufacturer of the new test, is published Feb. 27 in the New England Journal of Medicine.
Noninvasive prenatal screening began in the 1970s. Current tests looking for abnormalities include ultrasound imaging and maternal blood tests measuring a protein that's considered an indicator for Down syndrome.
If these screening tests predict an increased risk for chromosomal defects, pregnant women are typically urged to undergo invasive testing such as amniocentesis or chorionic villus sampling, which extract fetal DNA from the amniotic fluid or placenta, respectively. While these procedures can tell for certain if a fetus is abnormal, they also raise the risk of miscarriage.
At 21 centers in the United States, Bianchi's team collected blood samples from more than 1,900 pregnant women, average age 30, undergoing standard aneuploidy screening. The researchers compared the results with those obtained from cell-free DNA tests.
While the new technique, available since 2011, had been tested previously among women at high risk of bearing children with chromosomal abnormalities, this trial was the first among a general population of pregnant women with typical risks.
The study found that incorrect or "false positive" results for chromosomal defects stemming from cell-free DNA testing were significantly lower than those with standard screening -- 0.5 percent compared to 4.2 percent for Down and Edwards syndromes combined.
"I think this is a stronger test," said Dr. Edward McCabe, senior vice president and chief medical officer of the March of Dimes, who was not involved in the study. "I think more research is needed ... but I'm comfortable with the conclusion here that if your [cell-free DNA] test is negative, that's a strong indication your baby's not affected" by aneuploidy.
Bianchi agreed that additional research is needed before the cell-free DNA test can replace standard screening tests among low-risk pregnant women. She also noted that the cost of the new test is a concern -- from $500 to $2,000 depending on different factors, although insurance companies typically cover it for high-risk women. Obstetricians would also need to be educated about its use, she said.
SOURCES: Diana Bianchi, M.D., founding executive director, Mother Infant Research Institute, Floating Hospital for Children, Tufts Medical Center, and professor, pediatrics, obstetrics and gynecology, Tufts University School of Medicine, Boston; Edward McCabe, M.D., Ph.D., senior vice president and chief medical officer, March of Dimes; Feb. 27, 2014, New England Journal of Medicine
HealthDay
More Health News on:
Genetic Disorders

C-Section Birth May Raise Risk of Adult Obesity: Study: MedlinePlus

C-Section Birth May Raise Risk of Adult Obesity: Study: MedlinePlus

A service of the U.S. National Library of Medicine
From the National Institutes of HealthNational Institutes of Health








C-Section Birth May Raise Risk of Adult Obesity: Study

But the research doesn't prove cause-and-effect
By Mary Elizabeth Dallas
Wednesday, February 26, 2014
HealthDay news image
Related MedlinePlus Pages
WEDNESDAY, Feb. 26, 2014 (HealthDay News) -- Babies born by cesarean section seem more likely to be overweight or obese later in life, a new study contends.
The odds of being overweight are 26 percent higher for cesarean babies than those born vaginally, found researchers at Imperial College London, in England.
As the number of cesarean deliveries increases in many countries, pregnant women should be advised about the possible long-term consequences, the researchers said.
"There are good reasons why C-section may be the best option for many mothers and their babies, and C-sections can, on occasion, be lifesaving," senior study author Neena Modi said in a college news release. "However, we need to understand the long-term outcomes in order to provide the best advice to women who are considering cesarean delivery."
Previous studies have suggested that long-term health effects linked to cesarean births include childhood asthma and type 1 diabetes, the news release noted. In examining a possible link between this surgical procedure and obesity, the researchers analyzed information compiled from 15 studies that included more than 38,000 women from 10 different countries.
The new review, published Feb. 26 in PLoS ONE, found that the average body-mass index (BMI) of adults born by cesarean section was about one-half unit greater than the average BMI of babies born vaginally. BMI is a measurement of body fat that takes height and weight into account.
It should be noted that the study found an association between cesarean birth and increased odds of being overweight or obese in adulthood, but it didn't prove cause-and-effect.
The reason for this apparent link remains unclear, the researchers noted, and other factors not considered in their study could play a role.
"This study shows that babies born by C-section are more likely to be overweight or obese later in life," Modi said. "We now need to determine whether this is the result of the C-section, or if other reasons explain the association."
Study co-author Dr. Matthew Hyde suggested possible ways that C-sections might influence later body weight.
"The types of healthy bacteria in the gut differ in babies born by cesarean and vaginal delivery, which can have broad effects on health," Hyde said in the news release. "Also, the compression of the baby during vaginal birth appears to influence which genes are switched on, and this could have a long-term effect on metabolism."
Roughly one in three to four births in England is by cesarean section, the release noted. Meanwhile, 60 percent of pregnant women in China and nearly 50 percent of those in Brazil are having this type of delivery.
SOURCE: Imperial College London, news release, Feb. 26, 2014
HealthDay
More Health News on:
Cesarean Section
Obesity