New Venture Aims to Improve Diagnosis, Treatment of Pulmonary Fibrosis
Three Lakes Foundation, Yale University, and the University of Pittsburgh are joining forces to speed up the search for treatments for pulmonary fibrosis.
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Israel Emerges as Global Powerhouse in Rare Disease Research
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…
Dr. Noah Greenspan, Advocacy Groups: Avoiding COVID-19 Holds a Special Urgency for IPF Patients
Nearly 11 years ago, Dallas, Texas retiree Bill Vick was training for a triathlon and noticed that his swimming performance had started to decline. At the time, he was 72 and seemingly in peak health. “I went to the doctor, not because I felt bad, but because I was worried about my times and distances,…
Treating IPF Patients in the Age of COVID-19
NEW YORK, New York — Noah Greenspan, DPT, says the pulmonary fibrosis (PF) patients and others who had been coming to his Pulmonary Wellness and Rehabilitation Center until he closed it in March 2020 in the wake of the COVID-19 pandemic were among “the oldest, sickest, most complex patients in the book.” Since then, the…
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NORD Recognizes Progress in Fight Against Rare Disease With 2021 Rare Impact Awards
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
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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