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Further information

Craniofacial library

A curated selection of authoritative sources – guidelines, professional networks, literature and patient organisations.

This library links to selected, reliable external resources. It is a selection without any claim to completeness and without ranking or evaluation.

Note on external links: The linked pages are operated by third parties. We accept no responsibility for their content and do not adopt it as our own; a link does not constitute a recommendation in individual cases. Content is linked, not hosted. This page does not replace individual medical advice.

Medical guidelines

S3 guideline: Cleft lip and palate therapy (2025)

AWMF register 007-038

Evidence- and consensus-based recommendations for treating cleft lip and palate; current German-language guideline.

Open external page ↗ Patient guideline

Patient guideline on cleft therapy (2025)

AWMF

Plain-language version of the S3 guideline for those affected and families (PDF).

Open external page ↗ Guideline

Guideline: Treatment and management of craniosynostosis (2020)

ERN CRANIO / J Craniofac Surg 2021

Updated international guideline on diagnosis, treatment and follow-up of craniosynostosis (professional version, English).

Open external page ↗ Patient guideline

Craniosynostosis guideline – patient and family version (2023)

ERN CRANIO / J Craniofac Surg 2023

Plain-language version of the craniosynostosis guideline for those affected and relatives (English).

Open external page ↗

Professional networks & classification

ERN CRANIO

European Reference Network

European reference network for rare and complex craniofacial and ENT conditions; guidelines and patient information.

Open external page ↗ Classification

Orphanet

INSERM / European consortium

Portal for rare diseases: classification, background information and directories of specialist centres.

Open external page ↗

Studies & literature

Orphanet Journal of Rare Diseases

BMC / Springer Nature

Open-access journal on rare diseases – freely available reviews and studies.

Open external page ↗ Database

PubMed

U.S. National Library of Medicine (NIH)

Database of medical literature for targeted searches of studies and reviews.

Open external page ↗

Patients & organisations

ACPA – American Cleft Palate–Craniofacial Association

ACPA (USA)

Family-oriented information and brochures on clefts and craniofacial conditions (English).

Open external page ↗ Organisation · Switzerland

ProRaris – Swiss Alliance for Rare Diseases

ProRaris (Switzerland)

Umbrella organisation of patient groups for rare diseases in Switzerland.

Open external page ↗

Note: The content on this page is provided for general information and does not replace individual medical advice, diagnosis or treatment. Information on insurance coverage is non-binding; the case-by-case assessment by the responsible insurer is decisive. Please consult your care team if you have any questions.