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.

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Step 1

Looking at characteristics and symptoms before seeking further advice about diagnosic - Contact your General Practitioner

Step 2

Visiting the General Practitioner for the first time - STep 2 is usually (in the UK) where a genetic testing referral is made by GP to a General Consultant.

Step 3

Seeing the Geneticist for the first time, following GP referral. Often a Genetic Counsellor will also speak with you.

Step 4

Tests and next stage appointmets. Diagnosis, treatments and further information.

Step 5

Ongoing care in primary and specialist care

Step 6

managing the disease long term of dealing with complications.


Levels and types of support available, once again are dependent on a patients geographical location and how medical services are accessed in each country for example;

Other countries

There are two types of public health care coverage in Mexico. The first and most common is the Instituto Mexicano del Seguro Social (IMSS), which is provided when you're employed full time with a Mexican company, regardless of your nationality. If you don’t meet that criteria, you can pay into the same plan for a pretty modest monthly fee.

The second public type is called Seguro Popular. This service is provided nationally by the Mexican Government to ensure all Mexicans receive healthcare, regardless of their income or employment. Seguro Popular is only applicable to those who aren't eligible for IMSS or private health insurance.

Brazil/ India/ Korea/ Cuba/ Israel/ Thailand

South Africa


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