Author Archives: Larry Luxner

Unity and EU-wide Efforts Focus of Online Rare Disease Meeting

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…

Duchenne MD Patient Tanner Rico Approaches Life With Optimism

Traci and Tony Rico of Cardiff-by-the-Sea, California, juggle more than their share of family health issues. Their son, Tanner, has Duchenne muscular dystrophy, and their daughter, Pria, has recurrent respiratory papillomatosis (RPP) — a rare genetic condition that has led to 97 surgeries to remove tumors in her larynx…