Elsa (she/her)
@elsa-b.bsky.social
research genetic counselor 🧬
obsessed with my dog 🐶
obsessed with my dog 🐶
This was a VOLUNTEER committee that helped identify newborn babies at risk for potentially treatable(!!!) diseases 💔💔💔
Thousands of newborns with #RareDiseases are identified via #NewbornScreening each year, which saves lives. Eliminating the Advisory Committee on Heritable Disorders in Newborns & Children puts kids at risk of preventable death and suffering. Read #NORD’s statement: rarediseases.org/ceo-statemen...
NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children - National Organization for Rare Disorders
The sudden termination of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) raises serious concerns for the rare disease community and families nationwide.
rarediseases.org
April 5, 2025 at 12:09 AM
This was a VOLUNTEER committee that helped identify newborn babies at risk for potentially treatable(!!!) diseases 💔💔💔
things are very very bad but can also still be good. exhibit A: my dog playing in the snow
February 4, 2025 at 4:32 PM
things are very very bad but can also still be good. exhibit A: my dog playing in the snow