Bringing Aarskog families together

Michelle Erskine, Founder and Managing Director of The Aarskog Syndrome Foundation approached Clever Business Websites. The Aarskog Syndrome Foundation is a global alliance of people living with Aarskog Syndrome,a rare genetic disorder of the FDG1 gene that is linked to the X chromosome. Michelle was looking for a website that would raise awareness about the condition, but also a place to talk about events and news as well as providing a members area full of resources and a chat facility. Michelle was looking for a website that would not only offer information about the condition, but also a place to talk about events and news as well as providing a members area full of resources and a chat facility.

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.

aarskog full

 

A platform for parents, carers and people with Aarskog Syndrome

Michelle worked closely with the team, explaining exactly what she was looking for in her website. From the design brief we were able to research a suitable members profile plug-in, that would provide all of the functionality that Michelle was looking for.

Creating a platform for parents, carers and people with aarskog syndrome themselves was a key factor in the website’s requirements. The members area has been constructed in such a way that enables members to directly communicate with each other, offering personal support and information. The resources area provides important information about aarskog syndrome, useful links and resources that can be beneficial to those with aarskog syndrome, or carers of those with the condition.

A useful resource

The website went live a few months later, and Michelle is now looking at expanding the website to include more pages and information. Since its launch she has already adding a shop to the website, where you can purchase Team Aarskog t-shirts, with more items to be added over the coming months.

Michelle has since extended the items available to purchase in the online shop, as well as continuing to add more important content to the site.

What Michelle said...

What Michelle said...

“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. Aarskog Syndrome is close to my heart, for I am a carrier and my son has aarskog syndrome.” Founder and MD Michelle Erskine said.

“I started up the Aarskog Syndrome Foundation to help to raise awareness of the syndrome. It is a rare genetic condition, only occurring in 1 in every 0.4 million, primarily affecting males. Having a good website presence was so important to me. I wanted it not only to be a source of information but also a place where people can come for support and solidarity."

"We also use the site for professionals to engage and also for people to donate, this is important. As we develop we will be inviting professionals to collaborate and also asking people to donate."

"I am thrilled with the website and so pleased that we now how a platform that enables us to effectively communicate and inform people about the condition. It was a pleasure working with Clever Business Websites, who made the delivery of work in creating and designing a website seamless and enjoyable..”

facebook
twitter
youtube
google
linkedin