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Tell Us Your Story

Everyone living with a rare disease has a story to tell. Whether it affects you directly or you’re a friend, colleague, family member or healthcare professional, we all have our own challenges and ways of dealing with them.


We’ve seen and heard some incredible stories of bravery, of coming together, of optimism, happiness and overcoming the seemingly impossible.

So what about you? What’s your story? We would love to hear about your life with a rare disease, from your very first symptom to how you live your life now. If you need some inspiration, have a look at some stories that patients have already shared.

Or tell us about one small part of your life – what do you get up to day-to-day? Do you have any top tips you would like to share? Are you a parent of a child diagnosed with something rare and want to tell others about your experience?

Just fill out the form below with a few details, give us a brief description of your story and someone from our team will be in touch.


Are you a healthcare professional?

What rare disease affects your life?

Your location


Telephone (optional)

Please leave your phone number if you wish to be contacted by phone

Brief details of your story

With your permission, Shire would like to contact you by electronic means (such as email or SMS) with information about products and services that we feel may be of interest to you. You have the right to opt out of receiving such electronic communications, at any time, by contacting us. Depending on the country you reside in, Shire may be required by law to obtain your consent in order to be able to send such electronic communications to you.

I consent to be contacted by Shire by electronic means with information about Shire's products and services.

We encourage you to read our privacy policy.

A Shire representative will contact you to discuss your story.

The details you provide will be used solely for the purposes of handling your enquiry. Shire does not sell customer information to other companies.

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