The guide relaunches, with every claim sourced.

PUBLISHED 2026-08-30 · EVIDENCE UPDATE

What launched.

A full rewrite of jarcholevin.org as an independent, non-commercial family guide to the conditions once gathered under the name Jarcho-Levin syndrome: spondylothoracic dysostosis (STD) and spondylocostal dysostosis (SCD). The guide covers the terminology split, both conditions, the prenatal-to-adult care path, and genetics, in English, Spanish, and Chinese.

The standards every page follows.

• Every medical claim carries a named source that families can check themselves.
• Every page states what it is not: no diagnosis, no treatment directives, no referrals.
• Prognosis is presented as ranges with context, never single percentages stripped of their study populations.
• The old umbrella name is always immediately resolved into STD or SCD, because that fork changes everything downstream.

Source families relied on at launch.

• NORD (National Organization for Rare Disorders) condition guides
• GeneReviews entries via MEDLINE, for genetics and inheritance
• MedlinePlus Genetics summaries, for their plain-language inheritance explainers
• ISUOG practice guidelines on fetal spine and chest assessment
• Published case series and reviews (Ochsner Journal and others), read with their era and sampling biases stated
• Thoracic insufficiency syndrome program publications from major pediatric centers

Known gaps at launch.

We do not yet offer: a clinician directory by region, a glossary of every term a radiology report might contain, or family stories in patients' own words. The first two are planned. The third we will not fabricate; if families wish to contribute their experience, the address is at the bottom of every page.