Searching for Apert Syndrome Support information? Find all needed info by using official links provided below.
https://rarediseases.org/organizations/apert-syndrome-support-group/
The Apert Syndrome Support Group (ASSG) is a voluntary, non-profit, self-help organization dedicated to providing information and support to families of children with Apert syndrome. Apert syndrome is a rare genetic disorder characterized by premature closure of the fibrous joints between certain bones of the skull, fusion or webbing of the fingers and/or toes, and unusual facial features.
https://rarediseases.info.nih.gov/diseases/5833/index
83 rows · Apr 10, 2017 · Apert syndrome is characterized by fusion of the skull bones too early …
https://ghr.nlm.nih.gov/condition/apert-syndrome
Oct 15, 2019 · Apert syndrome is inherited in an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. Nearly all cases of this condition result from new (de novo) mutations in the gene that occur during the formation of reproductive cells (eggs or sperm) in an affected individual's parent or in early embryonic development.
This is an absolutely wonderful illustrated childrens' book about Simon Reinder, who happens to have been born with Apert Syndrome. The story begins with the anticipation of the family for the new child who is coming, and then coping with differences, and how the family reacts.
https://apert-syndrome.weebly.com/support-groups.html
Many kids with Apert Syndrome attend in order to recieve support and love from the CCA community. Website CCA’s Annual Family Retreat & Educational Symposium is held each June to provide individuals affected by a facial difference, their siblings and parents an opportunity to interact with others who have endured similar experiences.
https://www.chop.edu/conditions-diseases/apert-syndrome
Children with Apert Syndrome benefit from routine psychosocial support to address any behavioral, developmental, academic, emotional or social difficulties associated with their condition, appearance differences, and surgical treatments throughout childhood.
https://www.webmd.com/children/apert-syndrome-symptoms-treatments-prognosis
Apert syndrome is a genetic disorder that causes abnormal development of the skull. Babies with Apert syndrome are born with a distorted shape of the head and face. Many children with Apert syndrome also have other birth defects. Apert syndrome has no cure, but surgery can help correct some of the problems that result.
https://www.ncbi.nlm.nih.gov/books/NBK541728/
May 30, 2019 · Comprehensive care provided by a specialized craniofacial center that includes psychosocial support and holistic transition (to adult care) planning may improve quality of life for adults with Apert syndrome.
http://faces-cranio.org/Disord/Apert.htm
This web site on Apert Syndrome will give you directions to the on-line discussion network that is an excellent support resource!!. The Annual Apert Conference is usually held each year in Myrtle Beach, South Carolina at the Crown Reef Resort. It is open to families who have been affected by Apert Syndrome or any other similar craniofacial difference. Registration is free, but families pay for travel …
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