Disease Directory Lobar holoprosencephaly
Rare Disease

Lobar holoprosencephaly

Type

Clinical subtype

Gene

STIL, FGFR1, PTCH1, SHH, SIX3, TGIF1

About Lobar holoprosencephaly

Lobar holoprosencephaly is a rare disease catalogued by Orphanet (ORPHA:93924). It is associated with the STIL, FGFR1, PTCH1 genes. Search below for active recruiting clinical trials from ClinicalTrials.gov, or visit the Orphanet expert page for specialist centres, natural history studies, and patient registries.

Clinical Trial Eligibility Tips

What to know before applying to Lobar holoprosencephaly trials.

Search ClinicalTrials.gov for "Lobar holoprosencephaly" or filter by Orphanet code ORPHA:93924 to find disease-specific studies.

Ask your specialist to refer you to a Centre of Expertise — Orphanet lists all accredited centres for this condition worldwide.

Natural history studies and patient registries often enrol before drug trials open — contact the Orphanet patient community first.

Patient Resources

Patient Organization

Orphanet

Visit website ↗

Orphanet

European reference resource for rare diseases (ORPHA:93924)

View on Orphanet ↗

NORD

National Organization for Rare Disorders

Search NORD ↗

Find recruiting Lobar holoprosencephaly trials

Search 500,000+ studies from ClinicalTrials.gov, filtered for Lobar holoprosencephaly. Updated daily.