With 1 in 17 people affected by rare disease you would think everyone would be interested to learn about the huge impact it has on individuals, their families and communities and yet sadly this is not the case. In the years since my own son was diagnosed, I have met hundreds of families affected by rare disease and the one thing most report feeling is isolated, because there is so little understanding. With an estimated 6000 rare diseases affecting 35 million people across Europe alone I wanted to create a project that encouraged people to want to know more.


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The Beauty of Rare project introduces people to a selection of rare diseases and with each image I have tried to include quirky aspects to the condition or its impact. Each image is accompanied by the individual's own story in which they share how the disease affects them.

The project cannot make people better or help them find a miraculous cure but it can help people who feel isolated and in need to reach out to their community, breaking down barriers of isolation.

More info: samebutdifferentcic.org.uk

#1 Jack Was Diagnosed With Duchenne Muscular Dystrophy At Just 2 Years Old

Jack Was Diagnosed With Duchenne Muscular Dystrophy At Just 2 Years Old

“He looks healthy but that’s the heartbreaking thing, because at the end of the day, his muscles are wasting away and he is dying.”

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All With Heart 4 months ago

.I think we all died a little inside seeing this. May he have the best life that he deserves.

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#2 Toni's Three Children Were Affected By Niemann Pick Disease

Toni's Three Children Were Affected By Niemann Pick Disease

“I didn’t want anyone’s pity and I still feel I don’t need it... if someone says to me have you got children, and then I tell them our story, I can see pity in their eyes. I don’t want that, I want them to listen and understand that I am very grateful for the experiences I’ve had and the time that we had with our children.”

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Nadja Lambacher 4 months ago

Just googled this. Children with the infantile form of this disease become blind and deaf and almost always die before the age of 2. That is incredibly sad.

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#3 Lucy Often Dislocates Different Parts Of Her Body Due To EDS

Lucy Often Dislocates Different Parts Of Her Body Due To EDS

“If I could tell people one thing it would be that having a rare disease does not make you a weirdo. We’re just as normal as you, we just have a few quirks... I just want people to treat me normally and accept our differences.”

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Kikka io 4 months ago

EDS zebra present. I have now passed the period of dislocations, and I am progressively stuck, especially in the joints of the legs, but I continue to work, for the moment. there are days when I want to get my body back, because this does not answer me, but for the rest of the time it goes on.

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#4 Lizzie Was Diagnosed With Huntington's Disease At 16 And Is Now 26 And Living In A Care Home

Lizzie Was Diagnosed With Huntington's Disease At 16 And Is Now 26 And Living In A Care Home

“All Lizzie ever wanted was children. She just wanted a nice house and children. Four children she wanted, and she would have made an amazing mum.”

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glowworm2 4 months ago

This one makes me incredibly sad, the picture of Lizzie when she was healthy and the wilting roses pierce my heart.

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#5 Eddie Is Affected By Infantile Spasms And The Only Thing That Helps Is A Cannabis Compound Called CBD

Eddie Is Affected By Infantile Spasms And The Only Thing That Helps Is A Cannabis Compound Called CBD

“Eddie’s a boy who is seriously held back by his condition. I suppose in a way, I don’t entirely know who he is because of the fact he’s not developing and that’s pretty much because of the seizures.”

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glowworm2 4 months ago

Eddie looks pretty happy though. I don't think his condition can hold him back for long.

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#6 Without The Drug Trial Maddox Would Not Be Here Today

Without The Drug Trial Maddox Would Not Be Here Today

Maddox has a rare genetic disorder, which is a perinatal form of Hypophosphotasia (hpp). “We feel really lucky that we were in the right place at the right time and we had access to the drug for Maddox because without it he would not be here now.”

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#7 Jonathan Has Watched How Huntington's Disease Has Affected Both Siblings

Jonathan Has Watched How Huntington's Disease Has Affected Both Siblings

“The worst part of the condition? The end probably. Seeing my sister and my brother and the way it has affected them, but at this point I’m just trying to be positive. That’s all I’ve ever done.”

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Kiahna 4 months ago

I like how they portray family members as well. It's not just the sick person who suffers, it's everyone else around them too. When I was unwell, it affected my whole family. Not just me.

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#8 Meliz Needs A Blood Transfusion Every Three Weeks

Meliz Needs A Blood Transfusion Every Three Weeks

Meliz has Beta Thalassaemia Major which is a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body. “One of the hardest aspects of the condition for me is the tiredness. My back also sometimes throbs because of where the bone marrow is trying to produce more blood cells when I am due to have... Read More

Meliz has Beta Thalassaemia Major which is a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body. “One of the hardest aspects of the condition for me is the tiredness. My back also sometimes throbs because of where the bone marrow is trying to produce more blood cells when I am due to have a transfusion.”

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#9 Barbara Has MS And Sometimes Her Balance Issues Make Her Appear Drunk

Barbara Has MS And Sometimes Her Balance Issues Make Her Appear Drunk

“...I was a single parent I was diagnosed with progressive Multiple Sclerosis. To say it changed my life is possibly no understatement.”

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Stille20 4 months ago

She also has a cheeky smile.

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#10 Having A Child With SMA Has Overtaken My Life

Having A Child With SMA Has Overtaken My Life

“Everyone deserves the right to live a full life and these bright, intelligent, people need a chance. This is the biggest genetic killer of children under two so these perfectly bright, able children, that just want to be children, are dying.”

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Sarah 4 months ago

It would help if you said what SMA was. Most people here would have no idea what diseases the abbreviations are referring to.

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