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LANSING, Mich. (WLNS) –  on May 31 people strapped on their skates to raise money for a good cause. Chelsea Paradise was diagnosed with Huntington’s Disease 2 years ago. It’s a rare disease that destroys nerve cells in the brain, which can slow down someone’s thinking skills, and make it...
Jessica Kath has no pulse. But the 21-year old is full of heart, as her doctors have witnessed. “It’s been incredible watching her be a survivor,” says UT Southwestern cardiologist Mark Drazner. “Her story is amazing.” At birth, Jessica was diagnosed with a rare disease called Diamond-Blackfan Anemia. She doesn’t...
PARIS, France – The multidisciplinary European consortium MARVAX will receive 7.4 million euros over the next four years for the research and development of vaccines against Marburg viruses. Researchers from France, Spain and Germany will develop novel vaccine candidates, which will be tested in preclinical animal models and bring them...
Shangai, China and TEL AVIV, Israel and ATHENS, Greece and ZURICH, Switzerland — The World Orphan Drug Alliance (WODA), a global alliance of commercial distributors dedicated to providing access to treatments for rare diseases and specialty medicines in complex markets around the world, has expanded its reach to include the...
The Cayman Islands joins the United Nations in observing the first annual Sickle Cell Disease World Day on Friday, 19 June. The worldwide event will raise awareness of the disease, and follows a United Nations General Assembly resolution adopted in December 2008 that recognizes sickle cell disease as a public...