The Undiagnosed Diseases Program: The Last Hope for Patients with Mysterious Conditions
For many people with mysterious conditions, the Undiagnosed Diseases Program (UDP) is their last hope. Founded in 2008, the UDP is a clinical research program of the United States’ National Institutes of Health, which aims to provide answers to patients with mysterious conditions that have defied diagnosis. Using a unique combination of scientific and medical expertise [...]
Happy Birthday, Tarsila!
We wrote earlier this year about Tarsila, a little Brazilian girl with a long and complicated medical history (post here). Tomorrow, October 14, Tarsila turns two. She now has five teeth, and lately she even tries to talk, get up and grab whatever objects she can find. She seems to have a bit more strength, [...]
World Mental Health Day Calls for Integrated Care
Celebrated on October 10, the World Mental Health Day was started in 1992 by the World Federation for Mental Health. It aims to be an unified effort to promote greater public awareness and understanding of mental health and mental illness. The theme for the 2010 event follows the motive of last year’s World Mental Health [...]
New Hope for MS Patients: FDA Approves Oral Treatment for Reducing Relapses
The U.S. Food and Drug Administration (FDA) has announced its approval of Gilenya(TM) (fingolimod), the first oral treatment for relapsing forms of multiple sclerosis (MS). In patients treated with Gilenya, the relapses were significantly reduced and a delay of the progression of the disease was observed. While it is not a cure for MS, Gilenya [...]
Tomorrow is Mesothelioma Awareness Day
Tomorrow, September 26th, the first ever Mesothelioma Awareness Day will be held all over the United States. The event aims to spread awareness about the most aggressive and deadly of asbestos-related diseases. Mesothelioma, or malignant mesothelioma, is a rare form of cancer that develops from the protective lining that covers many of the body’s internal [...]
Pepsi Refresh Project inspires rare disease groups to compete for much needed funds
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 which ones will win a Pepsi Refresh Grant. A total of USD 1.3 million, in [...]
New impetus for the U.S. Orphan Drug Act
The United States Orphan Drug Act (US ODA) was passed in 1983, as way to stimulate the development of new therapies for rare diseases. According to the US ODA, orphan drugs are promising therapies intended to treat diseases affecting fewer than 200,000 people in the U.S. Products that fall into this category are eligible to [...]
European Commission appoints new members of the Committee of Experts on Rare Diseases
The European Commission (EC ) 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 diseases, in cooperation and consultation with the specialized [...]
The Casa dos Marcos: A Son’s Plea to his Mother
Casa dos Marcos was imagined by a rare boy to fulfill all of the unmet needs of those thousands of parents, who didn’t receive social or pedagogic support for their special children
Historian Tony Judt dies after two-year struggle with Amyotrophic Lateral Sclerosis
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 ALS.