Singapore — Just nine Singaporeans – or about 0.4 per cent of the 2,000 to 3,000 who have chronic rare diseases here – have received help from the Rare Disease Fund (RDF) since it was started in 2019. Most patients with rare diseases are able to get financial help from...
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A prescription drug that helps Lore Wilkinson walk and talk despite a rare muscle disease cost her so little for more than a decade that she didn’t even use her insurance to pay for it. But now, her Medicare insurance is shelling out about $40,000 for a one-month supply of...
BURTON, Ohio — The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler. His muscles were growing increasingly rigid and becoming more difficult to move. He went from leg braces to a walker and, finally, a wheelchair by the time he was 5....
A new policy framework is the only way to ensure that progress made for the 30 million people living with a rare disease in Europe is not left to luck or chance during the next decade. The eight Rare 2030 recommendations, the result of the two-year participative Foresight Study led by EURORDIS-Rare...
College Isn’t Easy, Especially during a pandemic College isn’t easy. Trust me, I’ve tried, and it was not for me. I think highly of anyone that makes it through college but with honors, I am doubly impressed. That’s just what Rosie Correll did when she graduated with honors and on...
A vote for Darius could mean a $100,000 donation in the fight against Muscular Dystrophy! Earlier this month, we brought you the story of Darius Weems and his quest to raise money and awareness to Duchenne Muscular Dystrophy- the number one genetic killer of children. Darius has DMD. It’s the...
CAMBRIDGE, Mass. – AavantiBio, a gene therapy company focused on transforming the lives of patients with rare genetic diseases, today announced the appointment of Christopher Wright, M.D., Ph.D., as Chief Medical Officer. A neurologist and neuroscientist, Dr. Wright brings to AavantiBio more than 20 years of medical research and drug...
CAMBRIDGE, Mass. – AavantiBio, a gene therapy company focused on transforming the lives of patients with rare genetic diseases, today announced the appointment of Ty Howton as Chief Operating Officer and General Counsel. A veteran life sciences executive, Mr. Howton brings to AavantiBio more than two decades of strategic, operational,...
CAMBRIDGE, Mass. – AavantiBio, a gene therapy company focused on transforming the lives of patients with rare genetic diseases, today announced new additions to its leadership team with the appointments of Paul Herzich as Chief Technology Officer and Jared Simons as Vice President of Manufacturing. Both Messrs. Herzich and Simons...
NEW YORK and CLEVELAND – Abeona Therapeutics Inc. (Nasdaq: ABEO), a fully-integrated leader in gene and cell therapy, announced the appointment of two with significant biotechnology and life sciences experience: Faith L. Charles, Partner, Corporate Transactions and Securities at Thompson Hine LLP and Mark Alvino, President at life sciences strategic...