Conditions and Diseases
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- Children's Craniofacial Association
- Dedicated to improving the quality of life for facially disfigured children and their families; addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.
- 22
- Crouzon Support Network
- Provides information and support for people affected by Crouzon Syndrome and related craniofacial anomalies. Includes FAQ, newsletter, events and online support.
- 23
- FACES: The National Craniofacial Association
- Support and resources concerning craniofacial disorders including information on 28 specific craniofacial disorders. Financial assistance for secondary costs. USA based organization.
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- Foundation for Faces of Children
- Expert information for families and health care professionals about craniofacial conditions.
- 25
- Goldenhar Family Support Group
- Aims to support families throughout the UK who face the day to day challenges of supporting relatives with Goldenhar Syndrome and related problems.
- 26
- Headlines
- Craniofacial support group in the UK for conditions associated with craniosynostosis. Includes details of the newsletter, events, fundraising and resources.
- 27
- Moebius Syndrome Foundation
- Non-profit organisation that aims to provide information and support to individuals with Moebius syndrome and their families. Includes resources, news and articles and information on support groups, events and research.
- 28
- TRPS Support Group UK
- Provides information and support to those with trichorhinophalangeal syndrome and their families. Includes information on the condition, patients’ stories and a forum.
- 29
- The Craniofacial Society of Great Britain and Ireland
- Information about the society, which is a multidisciplinary forum for specialists.
- 30
- The Facial Pain Association
- Aims to serve as an advocate for patients living with trigeminal neuralgia and related facial pain conditions by providing information, encouraging research and offering support.
- 31
- Yayasan Senyum: The Smile Foundation
- Non-profit organization supporting the delivery of health care to people with craniofacial disabilities, in particular children with cleft lip and palate in Bali, Lombok, Java and other areas of Indonesia.
- 32
- Alliance of Genetic Support Groups
- National coalition of consumers, professionals, and genetic support groups to voice the common concerns of children, adults, and families living with, and at risk for, genetic conditions.
- 33
- Cornelia de Lange Syndrome (CdLS) Foundation Outreach
- Family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.
- 35
- S.O.F.T.
- A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
- 36
- Acne Support Group in Cyberspace Chat Room
- A support group and chat area for everyday people of all ages and walks of life with acne to visit, discuss, share treatments, support each other, and move through the stressful event of having acne.
- 37
- Canada Mastocytosis Support
- For patients, caregivers and doctors. Also support information for all mast cell disorders.
- 38
- Ichthyosis Registry
- NIH-supported Registry promoting research into diagnosis and treatment of ichthyoses and related disorders.