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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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;

UK - GPs are supported by

NHS Scotland

NHS England

Republic of Ireland

Wales

Choose Well App

National Health Service of Wales

NHS Direct: Health advice and information service

NHS Hospital Directory

USA

Medical Practitioners are supported by the National Institute Health (NIH)

National Organisation for Rare Diseases (Nord)

GUARD

New Zealand

https://www.mcnz.org.nz/

Australia

https://www.alrc.gov.au/publications/10-genetic-testing/access-genetic-testing

Canada

http://www.canadian-healthcare.org/

Hawai

https://www.hawaiipacifichealth.org/

Argentina - Buenos Aires

http://argentinahealthcare.org/

Mexico

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

http://healthgov.net

South Africa

http://www.health.gov.za/

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