Cleft Palate and Craniofacial Committee ( other resources )

• LINKS (RESOURCES): INTRODUCTION

  To help professionals, families and individuals looking for information and support about cleft lip and palate and craniofacial conditions we have collated resources and links to the relevant professional organizations and parent associations from around the world.

  The views expressed in the resources are not necessarily the views of IALP.

  Professional organizations

  Resources compiled by national speech-language pathology associations for speech-language pathologists about cleft lip and palate and cleft palate speech.

  Other organizations

  Interdisciplinary professional organizations that bring together interested specialists from minority and majority world countries to advance care for individuals with cleft and craniofacial conditions. Webinars and resources available aimed at a professional audience.

  Teaching and learning materials

  Resources for SLPs interested in learning more about cleft palate speech, and resources for SLPs to share with their clients and families.

  Information for client and family: Other resources

  Professional organizations

  Professional organizations are interdisciplinary organizations run by and for specialist professionals working with individuals with cleft lip and palate. They have information about cleft lip and palate, and a number of resources to support families.

  Parent associations

  Parent associations are run by individuals with cleft lip and palate and their families and aim to support and resources to other families and individuals with cleft lip and palate and craniofacial differences.

  22q11.2 Deletion Syndrome organizations

  Organizations aimed at supporting individuals with 22q11.2DS and their families.

  INFORMATION FOR THE CLIENT AND FAMILY

   

  Professional Organizations

  • American Cleft Palate-Craniofacial Association – US

  Family resources:

  https://cleftline.org/family-resources/ (English version)

  https://cleftline.org/recursos-para-la-familia/ (Spanish version)

  -Overview of cleft & craniofacial conditions    https://cleftline.org/family-resources/introduction-to-cleft-craniofacial-conditions/

  -Educational booklets & fact sheets    https://cleftline.org/family-resources/booklets-fact-sheets/

  -Feeding your baby with a cleft    https://cleftline.org/family-resources/feeding-your-baby/

  -A glossary of frequently used terms    https://cleftline.org/family-resources/glossary-of-terms/

  • Australasian Cleft Lip and Palate Association – Australia and New Zealand http://www.cleft.org.au/members/education/

  Parent Associations

  • Cleft Lip and Palate Association – UK https://www.clapa.com/

  -Information on support services    https://www.clapa.com/support/clapas-services/

  -information about cleft lip and palate treatment    https://www.clapa.com/treatment/

  • Headlines Craniofacial Support – UK https://www.headlines.org.uk/index.asp
  • Cleft Lip and Palate Association of Ireland – Ireland http://www.cleft.ie/
  • About Face – Canada https://www.aboutface.ca/
  • Cleft Connect – Australia http://cleftconnect.org.au/
  • Cleft New Zealand – New Zealand https://www.cleft.org.nz/
  • Hong Kong Association for Cleft Lip and Palate – Hong Kong

  https://www.cleftlip.org.hk/en/ (English version)

  https://www.cleftlip.org.hk/ (Chinese version)

  • Our Cleft Angels – Singapore https://ourcleftangels.wordpress.com/

  Other Organisations

  • Smile Train https://www.smiletrain.org/cleft-resources/patients-and-families
  • Children’s Craniofacial Association – US https://ccakids.org/
  • The Foundation for Faces of Children – US https://facesofchildren.org/
  • Cleft Pals – Australia: state-run organizations

  -New South Wales    https://cleftpalsnsw.org.au/

  -Queensland    https://www.cleftpalsqld.org.au/

  -Western Australia    https://www.cleftpalswa.org.au/

  22q11.2 Deletion Syndrome Organisations

  • The International 22q11.2 Foundation https://www.22q.org/
  • 22q Family Foundation – US https://22qfamilyfoundation.org/
  • Max Appeal – UK https://www.maxappeal.org.uk/

  OTHER RESOURCES

  Professional Organizations

  • American Cleft Palate-Craniofacial Association (ASHA) – US

  -Practice Portal: provides information to facilitate SLPs’ clinical decision making for children birth to school age with CLP; some information related to children with VPI    https://www.asha.org/Practice-Portal/Clinical-Topics/Cleft-Lip-and-Palate/

  -Evidence Map: recommendations for SLPs for assessment and treatment of children with CLP or other craniofacial difference https://www.asha.org/EvidenceMapLanding.aspx?id=8589936384&recentarticles=false&year=undefined&tab=all

  -Publication for Special Interest Group 5, Craniofacial and Velopharyngeal Disorders, of ASHA    https://perspectives.pubs.asha.org/sig5

  • Royal College of Speech & Language Therapists (RCSLT) – UK https://www.rcslt.org/

  - Cleft lip and palate​ Overview    https://www.rcslt.org/speech-and-language-therapy/clinical-information/cleft-lip#section-1

  - Supporting people with cleft lip and palate and related disorders handout  https://www.rcslt.org/-/media/docs/RCSLT_Cleft_Palate_A4_FINAL.pdf

  Other Organisations

  • World Cleft Coalition: provides minimum core standards for cleft care – primarily for health professionals https://www.worldcleftcoalition.org/program.html
  • Circle of Cleft Professionals: cleft professionals working together to promote Comprehensive Cleft Care in ‘resource-constrained contexts’ https://transformingfaces.org/cocp

  Teaching and Learning Materials

  • LEADERSproject: supports SLPs to provide assessment and intervention to children with cleft palate. Resources available in multiple languages for speech assessment, home practice, therapy, parent handouts and SLP training/education https://www.leadersproject.org/english-cleft-palate-directory/
  • Cleft palate International Speech Issues (CLISPI) – Scandinavia: provides resources for SLPs working in cleft teams, and interested in learning about cleft speech disorders https://clispi.com/clispi.php?id=265&mid=265
  • International Consortium for Health Outcome Measurement (ICHOM): provides a standard set of measurements for use with patients with cleft lip and palate, developed by leaders in the field https://www.ichom.org/portfolio/cleft-lip-palate/
  • Oxford Craniofacial Unit – UK: Sing and Say is an initiative of the Oxford Craniofacial Unit Speech and Language Therapy Team with information and resources for families and SLPs https://www.ouh.nhs.uk/singandsay/default.aspx
  • Smile Train: provides resources for cleft team members including videos on cleft palate speech sounds and effective therapy techniques https://www.smiletrain.org/cleft-resources/best-practice-resources
  • American Cleft Palate-Craniofacial Association (ACPA) – US: provides speech samples of normal and hypernasal speech https://acpa-cpf.org/speech-samples/