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Pepsi Refresh Project inspires rare disease groups to compete for much needed funds
Written on 3 Sep, 2010 at 13:39 in Wissenheilt | viewed 226 views times | 0 Comments
The Pepsi Refresh Project is a grants scheme providing millions of dollars to fund good ideas, big and small, that make the world a better place. Each month, one thousand ideas are selected and the public is asked to choose... (Continue reading)
The “Casa dos Marcos”: a son’s plea to his mother
Written on 27 Aug, 2010 at 13:18 in Wissenheilt | viewed 182 views times | 0 Comments
At the age of sixteen and after completing the mandatory schooling, a Portuguese boy named Marco faced the biggest challenge of his troubled life. A carrier of Cornelia de Lange, Marco could not find a school that would accept him.... (Continue reading)
European Commission appoints new members of the Committee of Experts on Rare Diseases
Written on 20 Aug, 2010 at 9:29 in Wissenheilt | viewed 232 views times | 0 Comments
The European Commission (EU) has recently announced the members of its new Committee of Experts on Rare Diseases (EU CERD). Established in November 2009, The EU CERD is charged with aiding the EU with the preparation and implementation of activities in the field of rare... (Continue reading)
Historian Tony Judt dies after two-year struggle with amyotrophic lateral sclerosis
Written on 13 Aug, 2010 at 10:09 in Wissenheilt | viewed 235 views times | 0 Comments
The British historian Tony Judt, considered to be one of the most important political writers of his time, died last Friday after a two-year struggle with amyotrophic lateral sclerosis (ALS). Judt, a native of London, was 62. Tony Judt specialized in European... (Continue reading)
Alex’s Lemonade Stand – fighting childhood cancer one cup at a time
Written on 5 Aug, 2010 at 10:36 in Wissenheilt | viewed 234 views times | 0 Comments
This week marks six years since the founder of Alex’s Lemonade Stand, Alexandra Scott, passed away after a seven-year battle with cancer. She was eight years old. Born on January 18, 1996, Alex was diagnosed with neuroblastoma two days before her... (Continue reading)
Malaria-free mosquitoes created
Written on 30 Jul, 2010 at 11:41 in Wissenheilt | viewed 358 views times | 0 Comments
Malaria is caused by a parasite called Plasmodium, which is transmitted via the bites of infected mosquitoes. The Anopheles species of mosquito is the only breed of mosquito that transmits the parasite to humans. According to the World Health Organization,... (Continue reading)
Lizzie Velasquez – The girl who must eat every 15min to stay alive
Written on 23 Jul, 2010 at 15:17 in Wissenheilt | viewed 699 views times | 1 Comment
Ever since she was born, weight has been a problem for Lizzie Velasquez , a twenty-one year old Communications student. Born at 1.19 Kg (2 lbs 10 oz), she weighs only 26 Kg and is 1.57 meters (5 feet 2... (Continue reading)
European Conference on Rare Diseases 2010 – From Policies to Effective Services for Patients
Written on 16 Jul, 2010 at 10:45 in Wissenheilt | viewed 303 views times | 0 Comments
The European Conference on Rare Diseases (ECRD), which takes place every two years, is a unique forum that sees patient representatives of all the rare diseases gather with health care professionals, academics, researchers, policy makers and industry representatives to discuss... (Continue reading)
First unified protocol to provide primary care to rare disease patients introduced in Spain
Written on 9 Jul, 2010 at 12:49 in Wissenheilt | viewed 468 views times | 2 Comments
A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000 persons, according to EURORDIS. There are between 6,000 and 8,000 rare diseases, affecting between 6% and 8% of the European Union population. Rare... (Continue reading)
Ten years of Human Genome
Written on 2 Jul, 2010 at 14:38 in Wissenheilt | viewed 311 views times | 0 Comments
Ten years ago, Peter Collins and Craig Venter, leaders of the Human Genome Project anounced they had completed the first draft of the human genes sequence. Published later in 2001 in Nature, the initial decoding of the human genome’s 3 billion base pairs – about 22,000 genes –... (Continue reading)
Today is Wrong Trousers Day!
Written on 25 Jun, 2010 at 9:51 in Wissenheilt | viewed 374 views times | 0 Comments
The eccentric cheese-loving inventor Wallace and his faithful dog are on a mission to help sick kids. Today, June 25th, Wallace & Gromit are encouraging people from all walks of life to join them in their nightwear. They want everyone... (Continue reading)
Rare Disease Day 2010 Photo and Video Contest Winners
Written on 22 Jun, 2010 at 11:19 in Wissenheilt | viewed 397 views times | 0 Comments
Every year, from their offices near Paris, EURORDIS launches a photo and video contest to raise awareness for rare diseases. Initially it was an independent project, but in 2008 it become a fundamental part of the Rare Disease Day event. “Julia... (Continue reading)
Today is Paramyloidosis Observance Day
Written on 16 Jun, 2010 at 15:20 in Wissenheilt | viewed 338 views times | 0 Comments
Today, June 16, is the first Paramyloidosis Observance Day. This genetic disease is endemic in parts of Portugal and Sweden. It is thought to have originated in the north of Sweden and was then brought to Portugal during the Viking... (Continue reading)
Father’s Day turns 100 next Sunday. Can you help find 100 fathers to honour this year?
Written on 14 Jun, 2010 at 14:48 in Wissenheilt | viewed 340 views times | 0 Comments
The earliest record of Father’s Day was found in the ruins of Babylon. A young boy named Elmesu carved a Father’s Day message on a card made out of clay about 4,000 years ago. He wished father good health and... (Continue reading)
The Regulation for Orphan Drugs in Europe Celebrates its 10th Birthday
Written on 9 Jun, 2010 at 15:05 in Wissenheilt | viewed 515 views times | 3 Comments
The Orphan Regulation sets up the criteria for orphan drug designation in the European Union and describes the incentives to encourage the research, development and marketing of medicines to treat, prevent or diagnose rare diseases. The orphan designated status recognizes the... (Continue reading)
This Weekend is International Batten Disease Awareness Weekend (June 4-6)
Written on 4 Jun, 2010 at 9:04 in Wissenheilt | viewed 343 views times | 1 Comment
This weekend is International Batten Disease Awareness Weekend, an event intended to unite people worldwide to pursue the common goal of raising awareness and understanding of this rare genetic disease, while also enhancing fundraising activities and providing hope to children... (Continue reading)
Ella – Shine the Light on Aniridia
Written on 2 Jun, 2010 at 14:51 in Wissenheilt | viewed 450 views times | 1 Comment
Shortly after being born in 2006, Ella was diagnosed with WAGR syndrome, a rare chromosome disorder. Babies born with this syndrome often have no iris in their eyes, a condition called aniridia. They also have a 50% chance of developing... (Continue reading)
She made it! Cindy Abbott reaches summit of Mt. Everest!
Written on 28 May, 2010 at 14:12 in Wissenheilt | viewed 733 views times | 1 Comment
At the age of 48, after watching a Discovery Channel documentary called Everest: Beyond the Limit, Cindy Abbot decided to start training for mountain climbing. Soon after, she was diagnosed with Wegener’s Granulomatosis. After suffering from years of unusual and... (Continue reading)
Today is World Multiple Sclerosis (MS) Day
Written on 26 May, 2010 at 14:21 in Wissenheilt | viewed 583 views times | 1 Comment
Today, May 26th, is World Multiple Sclerosis (MS) Day, which aims to raise awareness of this chronic disease. MS is one of the most common disabling neurological conditions amongst young adults. More than two million people in the world have... (Continue reading)
Happy birthday, blue jeans!
Written on 20 May, 2010 at 15:38 in Wissenheilt | viewed 583 views times | 1 Comment
When you think about it, there is a close relationship between jeans and genes: they are both universal, they both come in pairs, and they are unique to the individual. Jeans and genes seem to have a natural affinity, which... (Continue reading)
What’s the matter with Tarsila?
Written on 18 May, 2010 at 11:33 in Wissenheilt | viewed 804 views times | 3 Comments
Tarsila is a year-and-a-half-old Brazilian girl who suffers from an undiagnosed medical disorder. She cannot sit on her own or crawl, she still has no teeth, and she can only mutter some sounds. Despite her young age, Tarsila has a vast... (Continue reading)
Today is Fibromyalgia Awareness Day
Written on 12 May, 2010 at 9:18 in Wissenheilt | viewed 406 views times | 0 Comments
Fibromyalgia Awareness Day, observed every May 12th, is a time to increase public understanding of fibromyalgia, a chronic pain disorder that affects 3 – 5% of the world’s population. This year’s motto, “Make Fibromyalgia Visible,” is aimed at bringing hope... (Continue reading)
Today is World Lupus Day
Written on 10 May, 2010 at 13:38 in Wissenheilt | viewed 555 views times | 0 Comments
Today, May 10th, is World Lupus Day , an initiative initiated by more than one hundred lupus organizations based in countries all around the world. Lupus is a chronic autoimmune connective tissue disease that can affect... (Continue reading)
‘Blogging Against Disablism’ Day
Written on 7 May, 2010 at 14:14 in Wissenheilt | viewed 367 views times | 0 Comments
disabled [dɪˈseɪbəld] adj a. lacking one or more physical powers, such as the ability to walk or to coordinate one’s movements, as from the effects of a disease or accident, or through mental impairment b. (as collective noun; preceded by the)... (Continue reading)
PatientsLikeMe – the big idea my brother inspired
Written on 4 May, 2010 at 16:05 in Wissenheilt | viewed 397 views times | 0 Comments
When Jamie and Ben Heywood’s brother, Stephen, was diagnosed with ALS , they devoted their lives to fighting the disease as well. Together with Jeff Cole, the Heywood brothers created a website where people can share and track data on... (Continue reading)
Rare opportunities appear on the horizon to treat rare diseases, says Nature Medicine
Written on 30 Apr, 2010 at 9:16 in Wissenheilt | viewed 513 views times | 0 Comments
Clinical trials often involve data from thousands of participants. However, two decades ago, the enzyme replacement therapy Adagen gained US approval solely on the basis of the case history of 12 people. How did Adagen make it through the rigors... (Continue reading)
Aimee Mullins: From Disabled to Super-abled
Written on 27 Apr, 2010 at 10:57 in Wissenheilt | viewed 671 views times | 0 Comments
Aimee Mullins was born with fibular hemimelia on both legs. The obstetrician who delivered her assured her parents she would never walk and indeed would spend the rest of her life using a wheelchair. But, from that moment on, Aimee... (Continue reading)
10 Facts About Malaria
Written on 23 Apr, 2010 at 14:13 in Wissenheilt | viewed 600 views times | 1 Comment
Fact 1 Malaria is a disease which can be transmitted to people of all ages. It is caused by parasites of the species plasmodium that are spread from person to person through the bites of infected mosquitoes. Fact 2 About half of... (Continue reading)
April 25: World Malaria Day
Written on 21 Apr, 2010 at 15:44 in Wissenheilt | viewed 485 views times | 0 Comments
World Malaria Day – a World Health Assembly initiative – is a day for recognizing the global effort to provide effective control of malaria around the world. Approximately half of the world’s population is at risk of malaria, particularly those living... (Continue reading)
Stephen Heywood: you can’t win if you don’t try
Written on 14 Apr, 2010 at 16:31 in Wissenheilt | viewed 537 views times | 1 Comment
In 1998 at the age of 29, Stephen Heywood — a self-taught architect specialized in the renovation of old houses — was diagnosed with amyotrophic lateral sclerosis (ALS). He lived with his wife and son in Massachusetts in the United... (Continue reading)
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