Canada Trails US in Patient Access to Rare Disease Therapies, CORD President Says
Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing…
Articles by Larry Luxner
US ‘Right to Try’ Law Meets with Mix of Praise and Criticism, Including Among Those with Rare Diseases
As President Trump signed the recently passed Right to Try legislation into law in a White House ceremony, Jordan McLinn…
#ECRD2018 – Genome Editing Might Be ‘Cure’ for Rare Diseases But Ethical Guidelines Needed, Panel Says
Should scientists have the right to edit the genes of future generations to eliminate hundreds, if not thousands, of potential…
#ERDC2018 – When Treating Rare Disease Patients, Don’t Overlook Quality of Life, Panel Urges
Finding treatments and potential cures for rare diseases is crucial, but so is the quality of patients’ lives — a…
#ERDC2018 – New EU Law to Protect Patient Data Could Affect Rare Disease Registries
Two years after approving it, the 28-member European Union will begin enforcing its General Data Protection Regulation (GDPR) — a…
#ECRD2018 – EU Must Do More for Rare Disease Patients, Eurordis Leaders Say
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in…
‘Rare Impact Awards’ Dinner Marks Orphan Drug Act and NORD at 35
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and…
#ECRD2018 – Patient Access and Collaboration Focus of Eurordis Meeting May 10-12
At least 800 people representing some 45 countries are soon expected to gather in Austria’s capital city, Vienna, for…
NIH Agency Pioneers Collaborative Research into Rare Diseases
A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed…
Genome Sequencing and Its Clinical Potential Focus of NYC Rare Disease Day Event
Genetic sequencing and the speed with which it can help diagnose a child’s disease — in addition to revealing the genes…