Ectodermal dysplasias are a diverse group of genetic disorders that involve defects of the hair, nails, teeth, skin and glands. Other parts of the body, such as the eyes or throat, may be affected as well
Fingernails and toenails may be thick, abnormally shaped, discoloured, ridged, slow-growing, or brittle. Sometimes nails may be absent. Cuticles may be prone to infection.
ozED is a support group that bind people from around Australia into a group to share experiences and knowledge
By subscribing to a small amount it helps us fund this not for profit support group thus improving the lives of both the children and carers
Yes. you are entitled to a carers allowance with centrelink when you or your child are diagnosed with Ectodermal dysplasia (ED). Letters from your pediatrician support a diagnosis as Ectodermal dysplasia is a recognised disability.
Yes. The Cleft Palate Program is a program that individuals with ED can access to receive free dental services. To be entitled to the program you need to be diagnosed with ED, and generally your dentist will assist in completing the forms required to access the program. Be sure to ask your dentist if they can assist. There are conditions surrounding the cleft palate program such as registering prior to years of age. For further information regarding this program you can speak to your local medicare office.
Even though most ED individuals do not present with Cleft Palate, when ED was recognised as a disability the government included ED on the cleft palate program.
Unfortunately this is a grey area & there is no clear cut answer to question. Each individual’s specific needs for assistance are different & the NDIS program does not follow 1 set of rules. We can only suggest speaking with your GP / Pediatrician & applying to the NDIS office to see if you are eligible. We have in our support group some families that have been successful & won’t mind sharing their stories & would be willing to provide assistance.