More than you can imagine: an anthology of rare experiences

What is ‘More than you can imagine: an anthology of rare experiences’?

Genetic Alliance UK will be publishing ‘More than you can imagine: an anthology of rare experiences’ as part of our Rare Disease Day 2025 campaign.

The anthology will be published online and will share a wide range of experiences from the genetic, rare and undiagnosed communities through creative works such as poetry, stories, photos and drawings. The creative works can be inspired by the phrase ‘more than you can imagine’, for example:

a poem about managing medication could be titled ‘more complicated than you can imagine’
a drawing of friends could be called ‘more connected than you can imagine’
a short story about medical appointments could be called ‘more waiting rooms than you can imagine’

We will launch the anthology at our Rare Disease Day 2025 events which will showcase a selection of works from the anthology.

The anthology will form a key part of our public awareness campaign, designed to raise the profile of genetic, rare and undiagnosed conditions in the UK.

Who can contribute to the anthology?

Anyone in the UK who is affected by a genetic, rare or undiagnosed condition is welcome to contribute to the anthology and we would love to hear from you! We welcome contributions from:

Adults, young people and children who have a genetic, rare or undiagnosed condition
Parents of a child or children with a genetic, rare or undiagnosed condition
Carers who support a person with a genetic, rare or undiagnosed condition
Siblings, family members, friends and loved ones of a person with a genetic, rare or undiagnosed condition .

Whatever your connection is to genetic, rare or undiagnosed conditions, we want you to tell us (and the world!) about it through poetry, an illustration, a short story, photos, a digital collage, etc.

What can be contributed to the anthology?

As long as it can be sent to us digitally (we will ask you to upload it to a form on our website) then you can contribute your creative work in any format.

For example, if you take a photo that shares your ‘more than you can imagine’ rare experience then you can upload them via our website form. If you write a poem then you can upload it as a document via our website form.

We encourage submissions of poetry, short stories, photography, drawings and illustrations and we are excited to see a variety of creative representations of the experience of rare conditions. As long as it can be submitted digitally then we will gladly receive all types of creative work – the sky’s the limit!

Your submission:

should represent your ‘more than you can imagine’ rare experience
must be in digital format (for example, pdf, jpeg or png file format no more than 64MB in size)
can only include images, names or descriptions of people if those people have given their permission to be included

All contributions should be representative of your experience of rare conditions and must meet the following criteria:

Must be able to be sent digitally (by email) as one, single item.
Must be sent as a pdf, jpeg or png file of no more than 64MB.
Must not feature any photos, visual representations, names or stories about people who have not provided express consent to be included within your contribution.

Please note that contributions must be original works and are made on an entirely voluntary basis. Genetic Alliance UK cannot provide payment to contributors.

Do you have an idea that does not meet the criteria? Contact [email protected] with a brief explanation of your idea (no more than 150 words) and we will try to help.

How to contribute to the anthology

You can submit your creative work via our form below. Complete the website form and upload your submission before 12:00 noon on Friday 10 January 2025 – it’s that easy!

Once all contributions have been received, the team at Genetic Alliance UK will select pieces that represent the broad diversity of the rare conditions community and reflect experiences from across the UK. Successful contributors will be contacted by email by [email protected]

Contributions that are received, but not selected for use in the anthology may be shared via Genetic Alliance UK’s website, social media and publications. They may also be considered for future editions of the anthology.

How will contributions be used?

Genetic Alliance UK will select contributions for the Rare Disease Day 2025 ‘more than you can imagine’ anthology. The anthology will be publicly available on our website and shared widely on our social media.

Contributions used in the anthology may also be displayed at Genetic Alliance UK events and included in future Genetic Alliance UK publications. With your consent, contributions used in the anthology may also be shared with our press contacts.

With your consent, contributions that are not used in the anthology may be shared on Genetic Alliance UK’s website, social media and publications. They may also be considered for future editions of the anthology.

Will the anthology be free?

Yes! The anthology will be designed to raise awareness of the experience of genetic, rare and undiagnosed conditions and amplify the voices of our communities so we want as many people as possible to see it. There will be no cost for downloading or receiving the anthology and it will be available to all.

GDPR statement – PLEASE READ

Thank you for sharing your submission with us. It will be a vital tool for helping raise awareness of genetic, rare and undiagnosed conditions.

Your submission may be published on our website, included in future publications and promoted via our digital newsletters and social media channels.

Unless you have given us express permission, we will not use your submission for any other purpose than ‘More than you can imagine’: an anthology of rare experiences’.

A copy of your submission will be kept securely in our password protected files in accordance and compliance with the GDPR (the General Data Protection Regulation) guidelines (the General Data Protection Regulation). Your contact details will be held on our secure database.

We will not share your story or photographs with anyone else to publish or use without asking your permission first, but please be aware that once they are in the public domain we cannot stop other people from sharing or linking to them from their websites and/or social media.

Your privacy is very important to us. We may edit your story and photos to remove any personal details (such as dates of birth or name badges). If you would prefer, you can remain completely anonymous or choose to use different names in your submission.

You can ask us to stop using your submission at any time by emailing [email protected] and we will remove it from our website within 7 working days. We will not however be able to retrospectively remove it from digital newsletters that have already been sent out or social media posts that have already been published so we cannot guarantee it will never be seen again.

For more information about how we keep your data safe please see our privacy policy.

If you have any questions about submitting a creative work for the anthology, any queries about the GDPR statement or consent form or if you would like this information in an alternative format then please email: [email protected]

Important information

You must submit your content by 12:00 noon on Friday 10 January 2025.
We will remove any text that is promoting or advertising commercial companies.
We will potentially share the link to your story on social media including Facebook, Twitter/X and Instagram, and will encourage our supporters to do the same.
By sharing your submission with us for publication, you are confirming that the rights to any materials are yours, and that the sources are credited as necessary. You are also granting Rare Disease UK and Genetic Alliance UK rights to the copy. We may reproduce your submission in its entirety, or parts from it, in other materials.

For more information about how we keep your data safe please see our privacy policy.

If you’d like to support more projects like this, then please consider donating today. Thank you.

RDD 2025 Anthology Submission Form

Form to submit creative work for potential inclusion in Rare Disease Day 2025 anthology, 'more than you can imagine: an anthology of rare experience'.

Name(Required)

First Last

Email(Required)

Your location(Required)

ZIP / Postal Code Country

Your condition(s)(Required)

I am completing this form(Required)

for me

for someone else

If you are completing this form for someone else, what is your relationship to them?

Age range of person who produced creative work(Required)

Ethnicity of person who produced creative work(Required)

Title of the creative work

If you would like to share additional information/background on your submission then please write it here (100 words or less)

Please upload your creative work here

Max. file size: 50 MB.

Please tell us your social media handles if you would like us to include them in our social media posts (for example, Instagram, Twitter/X and/or Facebook)

Would you like to share your pronouns with us? If yes, please share below.

Please tick to consent to the following:

My written content and any accompanying images/creative work being published on the Genetic Alliance UK website and promoted via Genetic Alliance UK’s digital newsletters and social media channels.

Genetic Alliance UK securely saving my contact details and a copy of my submitted content (including copy, images, photographs and any other submitted creative works).

Rare Disease UK/ Genetic Alliance UK using the images I have provided for their promotional activities related to sharing my content, such as on their website, social media channels and for fundraising materials, or in certain situations where further explicit permission has been provided.

Genetic Alliance UK using the creative work/content I have submitted as part of their content library that may be used in future publications and promotional activities such as on their website, social media channels and for fundraising materials.

I have read and understand Genetic Alliance UK's GDPR statement and Privacy Policy.

Phone

This field is for validation purposes and should be left unchanged.

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