As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn…
Articles by Larry Luxner
The Greek father of a boy with Duchenne muscular dystrophy (DMD) — and a financial consultant — says that when it…
Should scientists have the right to edit the genes of future generations to eliminate hundreds, if not thousands, of potential…
Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a…
Two years after approving it, the 28-member European Union will begin enforcing its General Data Protection Regulation (GDPR) — a…
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and…
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in…
The Duchenne Registry, formerly known as DuchenneConnect, marks its 10th anniversary as the world’s largest repository of patient-reported data on…
At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for…
It’s not every day a Southeast Asian monarchy bestows a $100,000 prize on a U.S. government research agency. In fact,…