Rare Diseases
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- Power of Film Brings Awareness of Rare DiseaseThe documentary, The Dark Side of the Sun, raises awareness of the rare disease Xeroderma Pigmentosum (XP).
- The Development of Medicines to Fight Rare Diseases in the PipelineRare diseases are claiming more life than the well known diseases. Keeping this fact in mind, researchers across the world are doing research and study on these diseases.
- More Research and Funding Are Needed to Discover Causes and Treatments for Rare DiseasesRare diseases do not get the attention needed to create funding for research because they affect such a small number of the nation's population. These rare diseases need more attention and research.
- Sirenomelia: Mermaid SyndromeFebruary 28th is rare disease day. It is estimated that there are 6,000-8,000 rare diseases in the world today. In the United States, a rare disease is defined as: A disease or disorder that affects fewer than 200,000 Americans at any given time.
Only One Day Left Until Rare Disease Day 2010Rare Disease Day 2010 is one day away now. It's best to keep this an all year thing, knowledge is power! On 02/28/2010 the day is recognized world wide.
Rare Disease Day - February 28This February 28, 2010, will be the second annual Rare Disease Day. It is held to call attention to the importance of developing tests and treatments for rare bone diseases.
Rare Disease Day 2009On February 28th, 2009 the world celebrated Rare Disease Day.- 1 in Million - Rare DiseasesRecently, Michael Jackson was reported to be suffering from a rare genetic disease called Alpha-1 antitrypsin deficiency. The condition is just one among the 8,000 or so known rare disease worldwide.
- Autoimmune Lymphoproliferative Syndrome: Symptoms, Diagnosis and TreatmentAutoimmune Lymphoproliferative Syndrome is a rare disease characterized by 3 main conditions.
- Rare Diseases: Amish Lethal MicrocephalyUnfortunately this disease has no cure until today. Treatments available are only of a supportive nature.
- Acute Intermittent Porphyria: A Rare DiseasePart of the problem with rare diseases is that the general practice doctor does not know them. This make difficult to diagnose a rare disease and are often misdiagnosed.
- Acromegaly - This Rare Disease Can Cause Giantism and Facial DistortionAcromegaly is a rare disease caused by over production of the growth hormone. This article cites the myriad debilitating changes sustained in the body; causes of the disorder, signs and symptoms of the disease and treatment options.
- Patient Support Groups for Rare DiseasesYou have just found out you have a rare Disease. Other than moral support from friends and family members where will you go to find information as well as get direction? Below is a list of support groups that might assist you.
- Rare Diseases: Solutions for Orphan DrugsIn 1983, US Congress passed the Orphan Drug Act. - opened the doorway for drug companies to invest, research and develope orphan drugs, which become profitable. Countries, members of Congress, and science, initiated further gains for orphan drugs.
- Polycythemia Vera and Orphan DrugsThere is little incentive to develop orphan drugs for rare diseases. Therefore, there are government programs to provide incentives.
Brief Excursion into the World of Online Medical AdviceDoctors Should Network. Some seemingly reliable starting points. And a caveat or two.
When You Think Your Life is HardAllison is 10 years old and she is living with a rare disease called Mucopolysaccharidosis(MPS)1. The Make A Wish Foundation is bringing joy to children - support them today and tell them, "Alli sent you!"- Rare Diseases in Dogs: Canine LeishmaniasisCanine leishmaniasis is a zoonotic disease that first developed in Europe during the early 1900s. Without treatment, the disease can be fatal in dogs.
- Rare Diseases Such as Werewolf Syndrome and MoreFive extremely rare and weird diseases from all over the world that you will find bizarre. Some of these conditions are extremely rare and, some of which, are only found in certain parts of the world.
Vanishing Bone SyndromeAn overview of the mysterious disease, "Vanishing Bone Syndrome."- Melorheostosis-A Rare Skeletal DisorderI am trying to raise awareness of diseases that usually go unmentioned. My hope is that this creates awareness and support. Melorheostosis is said to affect 200,000 in the US.
- Craniofacial Deformities: Apert SyndromeThis paper describes the symptoms of Apert Syndrome. This article contains a link to medical centers to help families who are dealing with this rare disease.
3 Types of Sweet's SyndromeSweet's syndrome was first described in 1964 by Dr. Robert Douglas Sweet as Acute Febrile Neutrophilic Dermatosis. It is characterized by a sudden high fever, increased white blood cell count and a rash.- Stem Cell Research Leads to Possible Cure for the Rare Disease RDEBUntil Theresa Liao and her two little boys arrived in Minnesota from New Jersey in fall 2007, I had never heard of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Liao came to the University of Minnesota to pursue a possible cure for her sons' incurable disease.
Babies Born Without a Face: A Look into the Rare Disease Treacher Collins SyndromePeople are heavily judged by their appearance. It is hard for people to look at someone and not draw conclusions about them. Imagine now that a person is missing large portions of their face.
Skipping Your Pills Could Get You Sent to Jail!America has few epidemic diseases. This was not always true. To make sure it stays that way the government can make you take your medicine, like mom used to.
A Superb Runner's Legs Are Turned to Spaghetti and the Singer's Voice is Silenced!Just when the runner passes the finish line she stumbles. Something just doesn't seem right. She goes to her doctor. It's nothing! Later she finds it isn't nothing, her ability to walk is gone and so is her voice.- Travel and Lodging for Patients with Rare DiseasesAlthough not all of the organizations listed below are government agencies they are just as valuable in linking up patients and families to charitable or lower cost flights/ambulance services and housing.
