Co Antrim twins grateful of new service for those living with rare diseases in NI

The new ‘Stronger Together’ team has been set up by the Northern Ireland Rare Disease Partnership (NIRDP).

The charity works to advocate, connect, educate and innovate on behalf of the one in 17 people in Northern Ireland living with or working with a rare disease – people like Ballymena twins Lucy Smyth and Zoe Buxton who manage life with Fibrodysplasia Ossificans Progressiva Syndrome (FOPs).

They said: “Our condition is rare, affecting one in two million but as twins the statistics move to one in three billion.

“We know first-hand how incredibly isolating and frustrating it is to be diagnosed with a rare condition that no one seems to have heard of or have any information on.

“It would have been so helpful to have had a local support team available when we were first diagnosed, and we are sure that the Stronger Together team will help people to feel less alone as they move through their rare disease journey.”

Rhoda Walker, NIRDP chair, said: “We are so grateful to the Rank Foundation. They understood our vision to ensure that no-one is disadvantaged due to the rarity of the condition and have put in place funding over several years to support this goal.”

• For more information visit www.nirdp.org.uk