Author Archives: Larry Luxner

Vienna to Host RARE2019 Meeting on Rare Diseases

About 100 scientists, researchers, pharmaceutical executives, and others will converge on Austria’s capital city early next month for the 2nd International Congress on Advanced Treatments in Rare Diseases. The March 4-5 meeting, to take place at the Hilton Am Stadtpark Vienna, features 27 speakers on a variety of disorders…

Chinese PH Patients Form Beijing-based Advocacy Group

Pulmonary hypertension (PH) patients in China, the world’s most populous nation, finally have their own advocacy organization. The iSEEK Pulmonary Hypertension Hope Center, whose website is available only in Chinese for the moment, is located in the Xicheng district of Beijing, China’s capital city. It is run by Huan…

Rising Healthcare Costs Strain EU Budgets Even as New Therapies Flourish

Cash-strapped governments across the 28-member European Union are struggling to control runaway healthcare expenditures — at exactly the same time as the promise of new but expensive therapies to treat rare diseases has never been greater. That’s the paradox faced by pharmaceutical companies as well as patient advocacy groups in…

PAH Patients in Serbia Organize to Raise Awareness

Three years ago, Miloš Lazić taught physical education at a Belgrade elementary school while playing for Serbia’s championship water polo team. These days, Lazić is still a teacher — but he can barely take 10 steps without getting out of breath. Lazić, a big, muscular 37-year-old with tattoos on his biceps, has…