News

Research Moves Slowly. Rare Diseases Don't—So Patients Aren't Waiting
Patients with rare diseases are increasingly working to find and fund their own cures. But should they have to?
Congress needs to fix a policy that's blocking rare disease research | Opinion
Senators made the right decision for America's most vulnerable patients ― now, the House must follow suit. The ORPHAN Cures ...
Parliamentarian reverses course on rare disease drug price provision in tax bill
The Senate Parliamentarian reversed course on a small provision in the One Big Beautiful Bill Act that could boost cures for ...
Health Affairs7dOpinion
Congress Should Remove The Rare Disease Carve-Out From Medicare Drug Price Negotiation, Not Expand It
Expansion of the Medicare drug price negotiation rare disease drug carve-out would unnecessarily limit the number of drugs ...
Pharmaceutical Commerce3d
How Patient Advocacy Is Guiding Rare Disease Drug Development
Bruce Leuchter, CEO, Neurvati, discusses the vital role of public participation in healthcare policy, highlighting how ...
Rolling Out1mon
How AI is revolutionizing rare disease diagnosis - Rolling Out
Rare diseases present a perfect paradox for human diagnosticians. Their unfamiliarity makes them difficult to recognize, yet many leave subtle patterns of symptoms, lab results, ...
Hosted on MSN2mon
Health Department Creates Communicable Disease Tracking Dashboard - MSN
The dashboard provides information on many diseases in Eau Claire County, including: Respiratory viruses, like COVID-19 and influenza Vector-borne diseases, like Lyme disease and West Nile virus ...
BioTechniques2mon
Rare Disease Drug Development - BioTechniques
In her spare time, Oxana volunteers at the International Rare Disease Research Consortium (IRDiRC), where she is co-chair of the Regulatory Scientific Committee (RSC). In this interview, Oxana ...
Medindia4mon
Rare Disease Day 2025
Rare Disease Day is observed every year on the last day of February, the rarest day of the year In India, a disease is considered rare if it affects fewer than 100 people per 1,00,000 individuals ...