The care plan pathway and support
Patient support and information
Aarskog Syndrome is an ultra-rare disease and we're committed to ensuring all patients and carers voices are heard at all levels of society. By working within the #RareDisease community together with other #Rare patient organisations, charities and parliamentary groups, we campaign for the rights of those living with Aarskog Syndrome and other #Rare Diseases to ensure they have the same rights and freedoms as other children.
We offer a members’ only area which is free to use and has a simple registration process, a freephone number 0800 001 6623 and also closed Facebook group. You can also find us on twitter @AarskogSyndrome
Often many families experience many misdiagnoses before Aarskog Syndrome is finally confirmed. This can lead to delays in treatment and patients not accessing the support they need. Therefore, through the (ASCPP) this will ensure patients get the support they need from us as quickly as possible.
Types of support
- Pre & post genetic testing support, including medical & clinical genetics (UK) and global testing labs
- Educational psychological assessments, at primary level. A vital requirement in identifying special needs support and preparing young Aarskog children with the tools required for high school and future development
- Cardiology, optometry, urology, orthopedics are involved, depending on the individual
- Free phone helpline 0800 0016623
- Grants available