Simple Facts: 1 in 17 people are affected by rare | 10,000 conditions | 114,000 people in NI | every penny you donate will help support a family struggling to find the medical care or treatment they need 🦓💪💛

Our family condition hypermobile Ehlers Danlos Syndrome isn't even considered RARE anymore but is still rarely known! It could be as common as 1.in 227!

Even though the numbers are higher than ever thought before, there are still no clinics, consultants or even a specialist nurse in NI...no central support for people with EDS! And this story repeats for so many for the people in NI living with any of the 10,000 conditions!

So I continue to do my little bit to support the rare community. Raising awareness is more important than ever, providing support for those living with rare, seeking equity for this huge, often invisible community!

Can you help us? They say if you truly want to understand you should walk a mile in our shoes! Our ‘Wear Our Rare’ campaign, is so simple that anyone can be involved . Get your odd shoes and stripey socks (tights) at the ready and have a "funky footwear" day on 28th Feb - Rare Disease Day! Host a Rari-Tea or check out linktr.ee/nirdp for more ideas.

Consider donating (even £1 or £2 would be amazing) or if that's just not possible, you can be a huge help by talking to your family, friends, colleagues and boosting awareness of rare conditions across Northern Ireland! Finally please , please hit the share!

Thank you, Rhoda x