To date over 200 families in countries around the world are living with Aarskog Syndrome. In the UK around 15 or more families are effected with the syndrome. The US alone has over 100 known cases.
The spread is continually growing, with discoveries across Europe, Singapore, Argentina & South Africa, New Zealand, Sydney & Canada.

To date no UK organisation has existed previously to provide specific support for Aarskog Syndrome families.

For many years we have supported families who have sought us, by bringing together parents from across the world and sharing knowledge of symptoms & difficulties faced by their children either medically, psychologically or psychologically.

I wish to raise money to grow a supportive Charity so that the quality of life can be improved for all effected by Aarskog Syndrome.
So that each individual can fulfill 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. Support includes:

Genetic Testing
Growth hormone treatments

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.

Often, Cardiology, Optometry, Urology, Orthopedics are involved depending on the individual.

These tests are vital in identifying the difficulties Aarskog children face and by providing these assessments, the Foundation is helping each child a chance to succeed in life.

Please support us to fund our children & the needs of their families. It means so much to make a difference to every single child, parent or carer affected, help us make The Aarskog Foundation successful in providing vital support to all diagnosed with this condition.

"Bringing Aarskog families together, because together we can make a difference".