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Cholangiocarcinoma Foundation Helps Improve Odds for Patients With Rare Bile Duct Cancer

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Melinda Bachini, 52, never intended to be a patient advocate for a disease few people have ever heard of, let alone pronounce. But a Dec. 1, 2009, diagnosis of cholangiocarcinoma, also known as bile duct cancer, changed everything for the Billings, Montana, mother of 6. That day, the 41-year-old paramedic — who had been experiencing…

Hagit Baris-Feldman
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Israel Emerges as Global Powerhouse in Rare Disease Research

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TEL AVIV, Israel — On the 6th floor of Schneider Children’s Hospital in the Tel Aviv suburb of Petah Tikva, 30 children with Alagille syndrome and 2 with lysosomal acid lipase deficiency (LAL-D) receive specialized treatment from a trio of pediatric hepatologists. Across town, at Sheba Medical Center’s Edmond and Lily Safra Children’s Hospital, pediatric…

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NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards

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Under COVID-19’s lingering shadow, the National Organization of Rare Disorders (NORD) has presented its 2021 Rare Impact Awards to 24 pharmaceutical firms, researchers, politicians, and nonprofit groups for their efforts over the past year on behalf of patients with such illnesses. The virtual ceremony was hosted by John Whyte, MD, MPH, chief medical officer at WebMD, with commentary…

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FDA, CDC Urge COVID-19 Vaccines for Rare Disease Patients on NORD Webinar

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As the super-contagious Delta variant of COVID-19 sweeps across the globe, driving up infection rates as well as deaths, top US health officials are urging everyone 12 and older — including the country’s 30 million or so rare disease patients — to get vaccinated quickly. Some 185 million people have been infected, and nearly 4…

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