The Aarskog Foundation

We are the worlds largest international parent led, patient Charity for the X-linked Rare Disease Aarskog Syndrome.

The lives of around 0.4 per million people across the world are affected by this Rare Disease, which progresses into a serious life long condition of which to date there is no known cure.

The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited.

The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition.

Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person.

Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.

We are a supportive organisation working to improve the quality of life for each individual Aarskog child and their families helping them to fulfil their potential educationally, to give ongoing support for Aarskog children who struggle receiving vital assessments and to educate others about some of the real difficulties faced growing up with the syndrome.

External Resources