ONE BIG NUMBER
337
Camille MacMillan/STAT
What if your daughter had an extremely rare disease, a disease so rare that it was basically nonexistent in the scientific literature? If you’re Deepa Fernandes, you go on an epic quest to find her "people.”
In 2025, Fernandes embarked on a worldwide journey to help connect her daughter Maya to some of the 337 people with Nicolaides-Baraitser syndrome. Scientists are only just starting to get a handle on the disease, which can lead to seizures, stunted physical growth, language challenges, and intellectual disability.
This mother-daughter quest features pitstops in a Cypriot mountain village and arboretums across the United States, but it also digs into the “deep phenotyping” work happening so that scientists can create treatments for the syndrome. Read more.
BIOTECH
Trump tariffs causing havoc for biotech companies
President Trump promised biopharma companies that they would be able to get exemptions from the tariffs that took effect at the end of September. Some of them are still waiting for clear instructions on how to do that.
The biggest U.S. drugmakers struck agreements that have kept them temporarily free of these levies, but smaller biotech firms are still on the hook for these payments. Insiders say they are unsure on how to invest in their research and development — as well as how they might afford bringing products to the U.S. — when they might have to pay tariffs at varying percentages.
Read more from STAT’s Chelsea Cirruzzo.
MISC
More health news roundup
Lots of other news today:
- Pew Research Center released a report Wednesday on health and wellness influencers. It’s kind of staggering: 92% of influencers promote a product or service in their posts, they found. The promotion is particularly rampant in men’s health and nutrition spaces. Check out the rest of the report.
- Canada will no longer expand its medical-assistance-in-dying program to people with mental illness as their sole condition. You will need to have a terminal incurable disease to apply. STAT mostly covers U.S. health issues, but Canada’s program has been a model for some U.S. states who have MAID policies.