Today we and the whole world will celebrate Rare Disease Day. The themes of the day are;
- Rare is Many,
- Rare is Strong,
- Rare is Proud.
It’s a chance for us all to raise awareness of aniridia and what it is like to live day-to-day. As individuals we will be sharing our stories and showcasing our achievements. As an organisation we want to share in your reflections and give them a platform to a wider aniridia and rare disease community.
Below are a few ways you can celebrate Rare Disease Day on Sunday the 28 February 2021. Join us in raising the profile of those living with aniridia.
Share your Story
Rare Disease UK are asking individuals to share stories of how their condition impacts their life, to raise awareness. It’s an excellent opportunity for those with aniridia to have their voices heard. Please tell your story on social media using words, pictures or video. Tag us so we can share it with the wider aniridic and rare disease community!
Introduce yourself introduction followed by how aniridia impacts your day-to-day activities (school, work, hobbies). Ending with something since last February that you are excited to share with others or you are particularly proud of. Focus on the themes of Proud, Strong, Many when writing about how living with aniridia makes you feel.
It can be a couple of sentences or a paragraph. Consider adding a photo or two of yourself and what you have written about. Here is an example:
“My name is Aaron and I am a young person with aniridia. I also have Nystagmus. Having aniridia means that I was born without irises. Both affect how I see the world and how the world sees me. I enjoy volunteering, watching Youtube videos, listening to music and meeting my friends.
Having Aniridia does have an impact on the things I enjoy doing with my job included in this. I work in the charity sector within a very supportive organisation. My aniridia means that staring at a screen for long periods of time can cause my eyes to become tired quickly. I also take longer to read and do practical tasks online due to my eyes adjusting to following different lines of text as well as my use of a magnifier on my computer.
I have found my new job to be very supportive and open to the reasonable adjustments I take to work comfortably like taking breaks away from the screen and advising me on my time management.
I am very proud to be in this new role and to be able to have the opportunity to lead volunteers into community projects which matter to me. As one of my strengths is public speaking, I took the opportunity to do a presentation about my aniridia at work for my non-visually impaired colleagues this week!
Happy Rare Diseases Day. Please share your story of living with aniridia to raise awareness.
@AniridiaNetUK #RareDiseaseDay #RareReality”
Share our and others posts about Rare Disease Day.
Write your own about your life experiences. Use ‘aniridia’ and the #RareReality, #RareDiseaseDay hashtags to be noticed in the world wide activity. Tag us so we spot it and can share with the wider community. This will help amplify your story and raise awarenes.
- Facebook @Aniridia Network
- Twitter @AniridiaNetUK
- Instagram @aniridianetuk
Facebook frames and Twitter twibbons
These are graphics added to your profile picture to show support for a particular campaign. Rare Disease Day have one to add to your profile pictures to show support for the day
Add a Facebook frame:
- Go to your profile page and click on your circular picture
- Select Add frame
- Search for ‘Rare Disease Day 2021’
- Choose the frame you like best
Add a Twitter twibbon:
- Open the Rare Disease Day Twibbon:
- Choose a frame you like
- Click ‘add to Twitter’
- Sign into Twitter if prompted
- Click ‘Add the Twibbon to Twitter’
Add an Instagram Augmented Reailty
Instagram AR filter which will soon be live!
- Visit Rare Disease UK on Instagram.
- Click the smiley icon
- Pose to your heart’s delight and make additions
Rare Disease Day has produced banners for Facebook, Twitter, Linkedin and Instagram. You can either use these banners as a cover photo or share these banners in a post, tagging us and using the relevant hashtags. This would work really well for social media posts when you are sharing a story about living with aniridia.
We look forward to seeing all the stories, celebrations and reflections from our aniridia community. Together we are many to raise awareness and we are most certainly proud and strong!