Regional outreach programme, the Restricted Growth Association

There are more than 200 genetic conditions which cause restricted growth, each of them being very rare.

The Restricted Growth Association works to improve people's quality of life, enhance their place in society and lessen the fear of parents when their child is diagnosed.

With funding from the proceeds of this year's Jeans for Genes Day, the Association will hold a series of regional events for children and their families.

For some it might be the first time they've ever met  someone with a similar condition so a small regional gathering is less daunting.

It'll also be an opportunity to get medical information, a chance for the children to have fun and for families to feel they're not alone.

Emma and her sister, Kelly

Emma's story

Emma knew from a very young age that she was different to her friends.  Her mum, Angela, had explained to Emma what having achondroplasia would mean for her. 

Achondroplasia is the most common restricted growth condition.  For Emma it means her body is out of proportion - her arms and legs are shorter than average.  She, like many people with the condition, has a curvature of the spine and as a small child, she spent 16 months in a plaster cast from armpit to knee.

She still gets back pain now.  She often has headaches too, but it's a struggle for her to get people to understand the problems she has. 

"Sometimes my teachers think I've just got the 'Emma bug', they don't always believe I don't feel well because they can't see it."

Emma is 13 and when she's older she wants to run her own fashion business.  Like any teenager, she loves shopping but clothes always have to be altered and things like jeans are really difficult to buy.

"If I want a pair that are faded round the knee, when I make them short enough for me to wear the fade ends up round the bottom and looks stupid.  It's really annoying!"

Emma can share her frustrations with her friend Sophie, who also has achondroplasia and lives nearby.

"It's really important to have friends who are the same as you," she says.  "I love going to the family events that the Restricted Growth Association because  it's one of the few times I can look people in the eye."