The Aarskog Foundation

Do you want to join us in making a difference?

We are raising money  for The Aarskog Foundation and every single penny of your donation will help to fund life changing, vital research into Aarskog Syndrome.


More information about The Aarskog Foundation:

We are a global patient and parent run network of children and families across 34 countries, living with the Rare Disease, Aarskog Syndrome.
Our primary purposes are in identifying and supporting our patients, carriers and families living with Aarskog Syndrome, by creating better provision and support regarding access to long term, lifelong healthcare and management, education and improved research pathways.

Some information on the condition itself, Aarskog Syndrome:

AS is an X-linked recessive, rare genetic condition only discovered 50 years ago by Dagfin Aarskog, a Norwegian professor of pediatrics at the University of Bergen in 1970.

X-linked inheritance means that the gene actually causing Aarskog Syndrome (FGD1) is located on our X chromosome. Females have two X chromosomes; males have one X and one Y.

Only males actually have Aarskog Syndrome however, we see a large percentage of females who carry the FGD1 Gene in our community many of which have an adult onset of Autoimmune Diseases, such as Inflammatory and Rheumatoid Arthritis.


The prevalence of Aarskog Syndrome is 0.4 per Million.

In the UK and across the world patients, carriers, parents, and families are struggling within health and education as very little information exists in society about what Aarskog Syndrome is or what it is like living with Aarskog Syndrome.

To date Aarskog Syndrome is a known RARE genetic condition with no known cure.

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Thank you in advance for your contribution to our Charity it means so much to each and every person affected

Donations

  • Anonymous 
    • £300 
    • 2 d
  • Ondria Miller 
    • £365 
    • 22 d
  • Michelle Erskine 
    • £100 
    • 1 mo

Fundraising team: Team Aarskog! (5)

Michelle Erskine 
Organizer
Tobermory, Scotland, United Kingdom
The Aarskog Foundation 
Registered nonprofit
Donations eligible for Gift Aid.
Learn more
Ondria Miller 
Team member
Raised £365 from 1 donation
Delia Treby 
Team member
Leah Bailey 
Team member
Velvet Espinoza 
Team member
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