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…

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…

Pain Management Often Neglected in Huntington’s, Researchers Say

The uncontrolled jerking and writhing movements associated with Huntington’s disease are well known, along with cognitive decline. But doctors who treat Huntington’s patients are far less familiar with the pain and depression their patients endure almost constantly. That’s the consensus of a panel of experts who spoke at…

Global Enroll-HD Study Aims for Up to 30,000 Patients by 2023

Enroll-HD, the world’s largest observational study of Huntington’s disease, hopes to add thousands of patients to its registry, reaching a possible total of 30,000 over the next three years. Georg Bernhard Landwehrmeyer, MD, its principal investigator, spoke about the ambitious project at last month’s European Conference on Controversies…