Researchers at the University of the Basque Country (UPV/EHU) and the Achucarro neurosciences centre have discovered a new therapy for the fragile X chromosome syndrome. This new therapy proposes the modulation of the cerebral endocannabinoid system in order to ameliorate the symptoms of the Fragi

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The Drugs for Neglected Diseases initiative (DNDi) Latin America today announced that it will pledge the US $100,000 Carlos Slim Health Award to Chagas disease, the leading parasitic killer of the Americas"We are honoured to receive this award from the Carlos Slim Health Institute and we dedicate

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(BPT) - Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face“We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as a patient with unique needs,” says Carrie Ostrea of Las Ve

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The Internet contains thousands of videos documenting various activities and testimonials from the rare disease community, many of which can be accessed via websites such as YouTube and Vimeo. A growing number of these professionally made films and high-quality documentaries are scattered across E

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BOSTON, Mass. - The Lustgarten Foundation and the Pancreatic Cancer Action Network are proud to announce that they will join forces and efforts for Unite to Fight Pancreatic Cancer, a special walk event scheduled to take place in Boston at DCR's Mother's Rest Park on Saturday, September 28, 2013Th

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Newport Beach - April 10, 2013 – When Newport Beach Mom and Filmmaker Catherine Jayasuriya led the second annual Expedition Mt. Kinabalu in Malaysian Borneo last August, she took a film crew to capture the pain, the joy and the tears. A charity founded by Jayasuriya and her 20-year-old son Dusty

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The 17-year-old, who has a rare terminal illness called juvenile Batten disease, has found a 16-year-old boy in the US who shares her condition and can talk to her about itThe boy's mother contacted Kiaana's family after the Southern Times Messenger reported her plight on the Sunday Mail Reach Out

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WASHINGTON - Honoring heroes of the past and innovators of the future, the National Organization for Rare Disorders (NORD) will host a 30th Anniversary Celebration for the entire rare disease community on Tuesday, May 14 at the Mellon Auditorium in Washington, DC. This momentous occasion will "Sin

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A semester-long effort to raise awareness and support for research Friedreich’s ataxia, spearheaded by seniors Galen Dole and Sarah Gelbard, is in full swingThe Friedreich’s Ataxia Research Alliance (FARA) defines the disease as a “debilitating, life-shortening, degenerative neuro-muscular d

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In the year 2000, Lisa Wollman, a young, vibrant woman in the prime of her life, was pregnant with her second child, and like many expectant mothers, was experiencing changes in her mood and body. However, she knew something was not quite right. Lisa started experiencing anxiety and insomnia, which

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