Are you interested in writing a blog about your experience of rare disease?
Whether you live with a condition yourself, or are a family member or carer for someone who does, we want to hear from you! We believe that sharing real life experiences of rare disease is essential to raising awareness about the issues facing those who live with them. Blogs can help bring patients with similar conditions or symptoms together, and help people affected by rare diseases to feel less alone.
The guidelines below should give you an idea of what to write about in your Patient Experiences blog. Once you have written the piece, you can submit your blog to us by e-mailing firstname.lastname@example.org. If you are not sure whether your blog idea is appropriate, please e-mail us first to describe your idea (in no more than 100-150 words).
- We like our blogs to be quite short – no more than 750 words. Don’t worry – we won’t cut you off mid-sentence, but we may edit your piece and ask you to review it.
- Try to include sub-headings if you can – it breaks the post up a bit and helps draw attention to key element.
- Please send us a picture or two with the blog. We would prefer a high-resolution image if possible, and landscape images work best on our website.
- At the end of your post, please include your name and a short biography – a few lines about who you are and what you enjoy. We are happy to publish stories using your first name only, or anonymously. You can also include your website and Twitter handle if you have one.
Planning your piece:
- Decide what to write about. You won’t be able to cover everything in one blog piece, so choose a period of your life, or a particular issue that you face, that you would like to write about. Here are a few suggestions:
- Before I received a diagnosis.
- Managing my rare condition when there isn’t a treatment available.
- When my child first developed symptoms.
- Setting up/volunteering with a support group or patient organisation.
- Being involved in research.
- The difficulties of explaining my condition to friends.
- What impact has this issue or difficult period had in your life? Why is your story important? This is what you should try to get across throughout your blog.
- Do you have any tips or advice you’d like to share? What would you say to someone going through a similar experience? Other patients could learn coping mechanisms from your blog, please do not attempt to provide medical advice! (If someone needs medical help, their doctor should always be the first point of call).
5 tips for blogging about your rare disease:
- Write as if you are talking – blogs work best when they are conversational. Use words you would usually use – avoid looking at the thesaurus if you can!
- Don’t be afraid to share the difficult bits. It can be daunting to share experiences that have been challenging, but describing them could help others going through similar things. You might be able to help others by sharing how you coped with your experiences, and what support helped you (whether from friends, family, a patient organisation or support group).
- Stick to specific events, such as the time just before diagnosis, or a particular obstacle you have faced, such as learning to live with pain. When you have lived with a rare disease for a long time it can be tempting to try and write about everything you have been through. It is generally more impactful to focus on a significant period of your life.
- Describe how the events or obstacles have made you feel. It is easier for readers to relate to feelings than objective descriptions of events. For example, instead of:
“I was admitted to hospital for some tests so they could work out what was wrong. The next day, the doctor gave me the name of the condition and the name of a patient organisation in my area.”
Why not write:
“I was terrified when my GP said I needed to go to hospital for the tests – I could barely sleep the night I was there. It is hard to put into words what I felt when the doctor gave me the name of the condition. I’d never heard of it before, and I was confused. It was a relief when he handed me a leaflet for a patient organisation in my area. Their support has been invaluable.”
- Don’t put pressure on yourself to write about something you aren’t comfortable sharing. It can be hard to write about living with a rare disease, and if you’re not sure you feel up to it yet, that’s okay. We don’t give deadlines to people who want to write a blog, and you can take as long as you need to finish it. If you want to write about something you wouldn’t usually talk about, you can publish the post anonymously or with just your first name. Please tell us beforehand if you would like to do this.
What we can’t publish:
- Opinion pieces
Our Patient Experience Blog exists to help people affected by a rare disease share their stories. We do not publish opinion pieces about political issues or specific policy areas. Patients can get involved in our work campaigning to ensure that patients living with rare conditions have access to high quality services, treatment and support in many different ways. To find out how you can get involved, you can become a Rare Disease UK supporter by signing up to our Campaign Updates.
We wish we could promote every fundraising event for people affected by rare diseases, but we are unfortunately not able to do this. We can’t publish pieces that promote fundraising for individuals or charities, but writing a blog about your experiences could still be a good way to raise awareness of your experience among your friends, family and colleagues.
- Pieces by parents or family members about a patient over the age of 13, who have not given their prior consent for the piece to be written (if they are able to give consent). 13 is the minimum age restriction for most social media sites. If your child is above this age and is able to give consent, unless they have given consent for you to do so, please do not write blog pieces for our website about their experiences.
- We may edit your post, but we will send it back to you for your approval before it is published.
- All language must be sensitive to the experiences and ages of our readership.
- We will remove any text that is promoting or advertising commercial companies.
- We will share the link to the blog post on social media including Facebook and Twitter, and will encourage our supporters to do the same. We are able to tag you in these posts if you ask.
- Please do not send bullet points or rough notes as your submission. We are not able to write pieces on behalf of patients, unless you are unable to do so due to a disability.
- By telling us your story for publication on Rare Disease UK’s blog, you are confirming that the rights to any material are yours, and that the sources are credited as necessary. You are also granting Rare Disease UK rights to the copy. We may reproduce your blog, or quotes from your blog, in other materials.
Rare Disease UK would like to acknowledge that this document draws on the guidelines written by Mind.