Northern Ireland

Voice for rare disease sufferers in Northern Ireland

Stewart family

A new organisation has been set up in Northern Ireland to support people who suffer from rare diseases.

The Northern Ireland Rare Disease Partnership aims to give sufferers and their carers an independent voice.

The group, created with the Patient Client Council, aims to improve treatment and care for those affected by rare diseases.

Jane Stewart is one woman who hopes that the new partnership will help families like hers.

She suffers from Spondylo Ephysial Dysplasia (SED) - a genetic condition which her young son, Saul, has inherited. It is a form of restricted growth or dwarfism.

"I wouldn't change myself or my son or children like him for the world. But I would change the world for them," she said.

"I feel a partnership for rare disease is going to be extremely useful for families like ours living with a rare condition.

"In the information that I have about the rare disease partnership, the focus is on education, provision of special services and support."

Richard Dickson from the Patient Client Council said: "This partnership aims to be a voice for those people scattered across Northern Ireland affected by rare disease with no other means to speak up for themselves."

The partnership will lobby and advocate on their behalf.