People's Choice Vote

Voting is now open for the Rare Reach People’s choice award!

To vote, click THE ‘Vote Now’ button or send a text for your favourite entry USING DETAILS FOUND AT THE BOTTOM OF EACH ENTRANT’S PAGE.

 

Check out all the shortlisted entries below and vote for your favourite by Friday 16 April 2021.

The judges have made their decisions. The shortlisted entries for each category have been decided. Now it’s your chance to decide who you think is the ultimate storyteller. Each of the shortlisted entries across all of the categories will now go head to head to decide who is the Rare Reach Festival 2021 People’s Choice winner!

The People’s Choice winner will be announced on Tuesday 20 April.


HOW TO VIEW THE ENTRIES

Click on the images below to view the entry. Once you have viewed them all you can either return to this page to vote, or you can vote from the page of the entry you want to win. 

Rare Reach Festival Vote Now Graphic

BEST STORYTELLING BY A LARGE CHARITY OR INDUSTRY ORGANISATION

FORGOT YOUR DETAILS?

Contest Ended

The Elson Family

This video produced by Orchard-Tx tells the story of the Elson family and their daughter Connie’s diagnosis of metachromatic leukodystrophy, or MLD, a rare and life-threatening inherited disease of the body’s metabolic system.

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text LCIOA to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will be charged every time you vote.  25% of your donation will support the work of Genetic Alliance UK and 75% to a charity chosen by the entry you vote for.

Patrick’s 14 Mile Walk

Join Patrick as he goes for a walk around town, talks about the challenges of being able to get out and about when you have a physical disability and his fundraising.

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text LCIOB to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will be charged every time you vote.  25% of your donation will support the work of Genetic Alliance UK and 75% to a charity chosen by the entry you vote for.

Constance’s story

Constance shares her story about discovering she has autoimmune hepatitis, its impact on her RFA dreams and finding new dreams to pursue.

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

LCIOC to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will be charged every time you vote.  25% of your donation will support the work of Genetic Alliance UK and 75% to a charity chosen by the entry you vote for.

Read the rest

Best storytelling by a small charity group

Contest Ended

ROANNA’S STORY

Receiving a diagnosis of a rare condition is a major life changing event for families. Often, the first-time people encounter the term “thalassaemia” is during pregnancy or after the birth of their precious baby. Like my parents and many families that I’ve had the pleasure of meeting over the years, the diagnosis of their child having beta thalassaemia major shattered the world they once thought they knew.

As a severe form of thalassaemia is inherited from both parents who usually carry the trait unknowingly, testing is only offered in England after a woman becomes pregnant; despite it being covered by the NHS at any point in someone’s life. If the mother was identified as being a carrier of the condition, only then would the biological father be offered an invitation to be screened. Following a positive result from the father or if the father is absent or declines, Read the rest

Amarii, 1 in 110,000

In many ways Amarii is a “normal” four year old boy; he always wears a cheeky smile, loves to play, and likes nothing more than playing dress up! But in reality Amarii has been diagnosed with the ultra-rare and devastating condition, Niemann-Pick disease type C (NP-C)…a condition often referred to as “Childhood Alzheimers” due to the severity of the symptoms that often accompany it.

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text SCE to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will be charged every Read the rest

Will’s Story

CAUK Young Person’s Ambassador Will Sears, who has multiple #cavernomas, has written a poem about his condition, what it’s like to live with a #raredisease and how CAUK have helped him throughout his journey.

A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry. 1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium.

A spinal cavernoma is rarer than a brain cavernoma.

For more information about Cavernoma Alliance UK, please visit www.cavernoma.org.uk

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text SCA Read the rest

Amelie Story: You can carry on or give up

Daniel and Patricia Lewi were worried about their 15-month-old daughter Amelie. She had begun crawling and babbling like any other child her age but abruptly stopped. Other than that, she had a healthy appetite and was “beautiful and absolutely perfect” to her parents. “We thought it very strange for a child not to do something once they had started, so we took her to the doctor,” says her father Daniel, now 39.

In 2011, Amelie was referred to the Lewis’ local hospital in South London on the suspicion that she had a brain tumour. Multiple tests were carried out, including one to examine the back of her eye for the presence of a cherry-red spot.

Then, two weeks later, a bombshell was dropped on the Lewis: Amelie had Tay-Sachs, a rare and progressive neurodegenerative disease affecting just one in every 320,000 Read the rest

Lauren’s story

Next in our ongoing ‘Your Behçet’s Stories’ series, we heard from Lauren who told us about how she was diagnosed with Behçet’s following a stroke, her love of playing hockey, her ambition to become a paramedic, and much more! Thank you very much to Lauren for sharing your story with us! If you’d like to take part in the series as well, the details are at the bottom of the page.

Lauren is 28 and lives with her fiancé in Essex, having recently moved from Surrey. She is a Student Paramedic and enjoys playing hockey and being as active as possible. She was diagnosed with Behçet’s in 2012 after having a stroke, but had symptoms from around the age of 11, as well as multiple unexplained hospital admissions throughout her childhood which now make sense.

WHEN AND HOW DID YOU GET DIAGNOSED WITH BEHÇET’S?

When I was younger, Read the rest

The Aplastic Anaemia Trust

When we were first told that Max had aplastic anaemia, my initial feeling was relief. Relief that we didn’t hear the word “Cancer” – in particular leukaemia. All the tests had been pointing towards that, and Leukaemia is the word that kept getting dropped into conversation prior to the bone marrow biopsy.

The doctor & nurse who broke the news to us were fantastic – when they told us it was aplastic anaemia they also made it clear the severity of the condition, what the condition actually is, the next step & treatments available.

Obviously myself and my partner, Rachel, had already had accepted it was leukaemia – and were readying ourselves to fight that. Getting the diagnoses of aplastic anaemia knocked us back, simply because we had never heard of it. Even when the Doctor told us what it was, we still had to take Read the rest

Best storytelling by a family member

Contest Ended

@adnanthekaleju

How old is your baby?”

“Six”, I say, with a huge smile on my face.

“Six months?”

“No, six years”, still with a huge smile on my face. “He just turned six!”

I can see the embarrassment on your face. I can sense that you feel bad. But please, please don’t. I understand. I know Adnan looks like a baby. I know he looks different. I am not upset. I am proud. I am so proud to say that he is six. I am happy that you asked about him. I am happy that you acknowledged him.

Six years ago, I would drag myself with Adnan to multiple baby classes. I hated them. I told others how great they were. I made myself go so I could get out the house and meet other new mums. But I hated them. I felt lonely. I felt sad. I compared Adnan Read the rest

Video telling the story of how his honeymoon didn’t go quite as planned when his wife didn’t bounce back from a bout of food poisoning – eventually resulting in a diagnosis of Behcet’s disease.

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text FMF to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will be charged every time you vote.  25% of your donation will support the work of Genetic Alliance UK and 75% to a charity chosen by the entry you vote for.

Journey’s End

A little more than seven years ago, our family embarked upon a journey. A journey of exploration and discovery; almost a magical mystery tour! We had around nine months to pack and prepare, although it was only three weeks before departure that we received an inkling of where we might be going. And when we found out where we were going, we were advised not to travel at all. But I’m not usually one to take advice…

The long chain

Our guide on this journey-of-a-lifetime was a little boy. A very special little boy with sun kissed curls, dark eyes and a cheeky smile. He led us in many unexpected directions, often through difficult terrain, always through incredible beauty.

We met many other travellers along the way. With some, we only crossed paths. Others walked alongside us for a short or a very long while, with their own unique and wonderful Read the rest

Microcephaly means that a persons head is much smaller than expected. This could be due to an underlying genetic condition or because the brain has been damaged and stopped growing and therefore the head has also. It can also be an isolated condition in that the individual just has a smaller head.

I had never heard of microcephaly until a doctor told me following a growth scan when I was 37 weeks pregnant. Molly was showing as normal size body and limbs but her head was only the size of a 32 week old baby. They didn’t know much more and therefore she needed to be induced out, in 4 days time. When she was born she did indeed have microcephaly with a head circumference of only 31cm at 37+4 weeks, however overall she was much tinier than expected and so more in proportion. Molly had an MRI when she Read the rest

@adnanthekaleju

This photo was taken right before we got Rudy’s formal diagnosis, mid-October last year. The second slide is a message I sent to my family on the way to the hospital meeting 👉🏼 On gathering info for this page, I went through notes on my phone from throughout last year and this was in there. It struck me as it still rings true 🙃

Harry and I had both been asked to attend the meeting at the hospital about Rudy’s results, of the huge bank of blood tests that were taken 4 months previously in the summer. So we knew it was serious news, both being permitted to attend in “Covid times” and all. It had been four months since Rudys blood tests, so a long wait for answers, and lots of speculation. Naturally we obsessed over it, day in day out we did our own heads in playing Read the rest

“It’s seven years since I first heard the words ‘Tuberous Sclerosis Complex’.”

“I remember the date very clearly – Friday 24th February 2012 – but most other memories from that time are cloudy and vague, to say the least. You see, I was physically and emotionally drained. I had a five-month old baby who had spent the previous ten days behaving oddly, making strange jerky movements and crying incessantly. I had an energetic two-year old in the mix too. You can imagine what my life was like. So, my first reaction on hearing those words was “tubular what?” I thought immediately of the Mike Oldfield classic, Tubular Bells. That was about as much as my already-full brain could manage.

I was the kind of exhausted that every parent with a small baby and a toddler experiences at some point. But, I was also exhausted from the double-whammy of rejections I Read the rest

Best storytelling by a voluntary group

Contest Ended

Rare Strikes Back

Raising awareness of Rare Disease Day and Timothy Syndrome. Featuring the voice talent of Keith Allen and his daughter Teddie. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

We hope you enjoy our new film. Please help us by sharing it to raise awareness of…

#raredisease
#RareDiseaseDay
#rareismany #rareisstrong #rareisproud

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text VGA to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts cost £1 plus your standard rate message. You will Read the rest

Chloe’s Day

Facial Palsy UK is still a very young charity (set up in 2012), the first charity to offer specific support to people affected by facial palsy due to any cause.

Facial palsy, sometimes known as facial paralysis, is a condition resulting from damage or absence or impairment of the facial nerve that supplies the muscles of facial function and expression, and affects blinking, closing the eye for sleep, eating and drinking, speech, smiling and frowning.

Facial palsy can be the result of multiple causes: disease, injury, stroke, birth trauma, cancer, or neurological condition – to name but a few. Whatever the cause, the physical, emotional and psychological consequences of living with facial palsy are usually the same, although to varying degrees, and they can be equally devastating for the people affected and their families.

Should this entry win People’s Choice? Vote now!

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Simply click the vote Read the rest

Best storytelling by a young person

Contest Ended

A Series of Unfortunate Events
@laurenjayneward

A series of unfortunate events is exactly how I would describe the past couple of years of my life, this is mainly thanks to my ITP and the absolute chaos it’s brought along with it. Combined with the fact that I just naturally seem to attract chaos, these two things just make for an absolute train wreck. In recent years it’s just been one disaster after another with me.

I was diagnosed with ITP when I was 6 but for the most part of my life I was lucky enough to be able to live treatment and medication free, to the point where I almost forgot that I had it. ITP isn’t curable, it doesn’t go away, but for some people they respond well to treatment and it’s very manageable to the point where they can live ‘normally’. For a very long time, I Read the rest

Robbie Williamson

This was me a year ago. I was broken! I hit rock bottom my health was at its worse I had ulcers all over my body I was waking up every day feeling empty. —> Fast forward 1 year and I am slowly getting back my life, although I still suffer everyday I’m happier and striving to be the best I can! You are not alone 💙 #behcets #behcetsdisease #raredisease #behcetswarrior #mentalhealth #speakout

Should this entry win People’s Choice? Vote now!

VOTE ONLINE

Simply click the vote now box at the top of this page and enter your email address. You will only be able to vote once for one entry.

VOTE BY TEXT

Click below and text YPA to 70460 to vote and donate to support rare diseases.

Vote for as many entries as you like, as many times as you like!

Texts Read the rest

Rare disease day is a time to understand more than ever the need to be aware of and importance of rare conditions of which there are over 6000! 4 of my conditions are classed as rare diseases, and all effect me in different ways!

Today is a time for people with rare diseases to speak up and show their stripes, and I was amazed to find out that 1 in 17 people actually have at least one rare disease! There are over 6000 acknowledged rare diseases, all of which are important and deserve a voice, funding, research and good treatment.

So today I wear my zebra’s and I proudly wear my top that says “Be Different”! as a message to all people with rare diseases to not be afraid to show your stripes💛

rarediseaseday2021#raredisease#showyourstripes
#chronicillness#iamrare

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Simply click the vote now Read the rest

Best storytelling by an individual

Contest Ended
Mr Sulaiman Khan

I was born rare. I have a rare disease (a rare physical disability, Congenital Muscular Dystrophy, MDC1A). I have a rare mind and heart. I unlearn (and relearn) everything and love everyone daily in a rare way. I founded (and run) a rare business. And I live and give energy in a rare perspective.

Congenital Muscular Dystrophy is one of 7,000+ rare diseases in the world. The World Health Organisation estimates that one in seven people are impacted by a rare disease. 1 in 17 people will develop a rare disease at some point in their lives. Today 400 million people in the world – and 3 million in the UK – have a rare disease. But I love what my dear friend @tanvivas wrote today: “I’d say I’m rare but not diseased but hey!”

I often find that every day is a struggle, but I’m a continual work-in-progress. I’ve Read the rest

@luke.pembroke

My name is Luke. I was born with severe haemophilia B. In February 2020 I enrolled on to a gene therapy clinical trial. For my entry to the Rare Reach Festival I decided to give a brief glimpse in to my experience last year.

The rare disease community is something I am proud to be a part of and I have met some incredible advocates along the way. I truly hope to see the potential of gene therapy fulfilled for the wider rare disease community.

Find our more about rare disease here: https://www.raredisease.org.uk​ Shot entirely on iPhone. If you want to know more about my experience living with haemophilia over the past 26 years, check out the other videos on my

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Simply click the vote now box at the top of this page and enter your email address. You Read the rest

@paraclimberlea

The theme is ‘not every disability is visible’.
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I tried very hard to make my disability as invisible as possible, because I thought that would make my life easier. But that doesn’t make my disability invisible if you look close enough. Ultimately, I have spent so much time in my life pushing myself beyond reasonable limits, not living life to the full because I couldn’t bring myself to ask for whatever accommodations I needed to actually do what I wanted to do. That’s not fair. I’m trying to go beyond this now, and be the whole person that I am without being afraid of being seen as less of the great, smart, talented successful person that I ALSO am. Disabled people are great ✨
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I asked about what sprang to mind when I said ‘diversity in climbing’ and you all had such cool ideas. (Swipe!) Ultimately I Read the rest

@chronicallyjenni

Showing my stripes with Pride! 🦓💪🏻✨

What many of you may not know (because I didn’t) is that July is Disability Pride Month. The concept only came about in 1990 but it has 3 main goals:
✨ To change the way people think about and define disability.
✨ To break down and end the internalised shame felt by people with disabilities.
✨ To promote the belief in society that disability is a natural and beautiful part of human diversity in which people living with disabilities can take pride.

All of these things are so incredibly important and change needs to be made in wider society in regards to ableism, accessibility and representation. Especially as being disabled is one of the only minority and marginalised groups literally anyone can find themselves in overnight. Things are improving but I long for more disability representation in mainstream media. I can name 1, Read the rest

@beautiful_adventures_x

❅ I can’t stress enough for people to think before they speak if you have a friend/family member that suffers from a disability/invisible illness/chronic illness/rare disease. Something that you may class as a passing comment can cause more damage that you realise if it’s said to someone who’s suffering. It’s understandable that you don’t mean anything by it, but it would mean more if you just thought about what you where going to say before saying something that makes the person feel even more shit about their situation.
I have had these things said to me that have bothered/hurt me more than i can say.

•“I wish i was lucky enough to lose weight like you” – I’m losing weight through illness NOT through choice. I have a disease of the stomach and although i am physically starving hungry i cannot eat. I will be sick, be in agony, Read the rest

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