Rare Diseases

NIH-Funded Study Highlights the Importance of SCID Screenings

June 26, 2023 - An NIH-funded study in the Lancet highlighted the importance of newborn screenings for severe combined immunodeficiency (SCID). The study was a longitudinal analysis of 36 years of data from the Primary Immune Deficiency Treatment Consortium (PIDTC). “This study definitively shows that population-wide newborn screening for SCID has made it...

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Most People with Spinal Muscular Atrophy Utilize Gene Therapy

by Veronica Salib

The Health Union recently conducted a survey called Spinal Muscular Atrophy (SMA) in America to analyze the lives of people living with SMA in the United States. This rare chronic condition impacts...

Bluebird’s Gene Therapy Costs $3 Million per Treatment

by Veronica Salib

On September 16, 2022, the FDA granted bluebird bio accelerated approval for their gene therapy technology, Skysona. This technology is meant to treat active cerebral adrenoleukodystrophy (CALD) in...

Burkholderia Pseudomallei Bacteria Found for the First Time in the US

by Veronica Salib

According to a CDC health alert, Burkholderia pseudomallei, a bacterium that causes melioidosis, was found in the Mississippi Gulf Coast, making it the first reported case of the bacteria in the...

CDC Releases Stockpiled Vaccine for Infectious Monkeypox Disease

by Hayden Schmidt

CDC officials are releasing doses of the JYNNEOS vaccines and pledging to boost the national stockpile after multiple cases of the rare disease, monkeypox, emerged in the United States. Currently, the...

Colorado Man First to Test Positive for H5N1 Bird Flu Virus

by Samantha McGrail

An inmate in Colorado became the first human in the United States to test positive for the H5N1 strain of bird flu virus, according to state officials and the CDC. The individual contracted the...

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