Independent · cited · trilingual
This domain served families for 13 years before us.
Before this guide existed, jarcholevin.org was a Puerto Rican patient family foundation answering the same questions in Spanish. We took stewardship of the domain when it lapsed and rebuilt the service as an independent, cited guide.
Short answer: from roughly 2010 to 2023, this domain was the home of a Jarcho-Levin patient family foundation serving the Puerto Rican community, founded by Dr. Jarcho-Levin specialist physicians and family advocates. When the registration lapsed, we took stewardship of the domain and rebuilt it as an independent, cited, multilingual family guide, honoring the original mission of translating medical language for families.
The foundation years.
For over a decade, jarcholevin.org belonged to a foundation serving families affected by what was then called Jarcho-Levin syndrome, with deep roots in Puerto Rico, where the largest known cluster of spondylothoracic dysostosis families lives. Physicians including Dr. Santiago Rosado and colleagues devoted volunteer time to answering family questions in Spanish, explaining diagnoses, and never once pretending to replace a family's own doctors.
What we inherited, and what we kept.
When the domain became available after the foundation wound down, we saw a choice: let 13 years of accumulated trust point at a blank page, or continue the service in a form one person can sustain. We kept three things: the promise to explain rather than diagnose, the Spanish-language commitment, and the focus on this specific group of conditions. We changed the format from a foundation with staff to a cited static guide that states its sources.
What this site is not.
It is not the original foundation, and we are not those physicians. It carries no foundation's endorsement. It does not accept advertising, sells nothing, refers to no specific hospital, and offers no individual medical advice. Where the original authors answered questions personally, we answer in advance, in public, with citations anyone can check.
Why the dedication is real, not decorative.
The Puerto Rican STD community built the first support structures for these conditions in the world, including the family registry work of the 1990s and 2000s that made modern genotype-phenotype knowledge possible. Every Spanish sentence on this site, and much of the clinical understanding it translates, stands on work that community did first. That is worth saying out loud.
Domain records. Registration history and archived snapshots of the original site are publicly checkable through WHOIS records and web archives. We state this openly because families affected by rare disease have been burned by sites that hide their origins. WHOIS; Internet Archive