Rare but strong together
A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare.
But collectively people who have rare conditions are not rare – 1 in 17 people (3.5 million people in the UK). They have common needs and experiences.
For that reason Aniridia Network UK (ANUK) is a member of Rare Disease UK (RDUK). With others around the world we’re celebrating Rare Disease Day – on the infrequent leap day 29 February. The day’s theme is solidarity with the slogan “Rare but strong together”.
Check out the Rare Disease Day website for ways you can get involved.Here are some key ones:
Tell your story to the media
RDUK will be trying to generate media coverage to raise awareness on the day. It helps if they have patients or family members affected by rare conditions who are willing to tell their story. If you are willing to do this, fill out their media volunteer form (Word document).
Send completed forms to RDUK and a copy to ANUK.
As an aside, if you are ever talking to the media about aniridia please mention ANUK to help raise our profile, particularly for those who may not have heard of us.
Look out for the supplement about Rare Disease Day in the Independent newspaper similar to last years supplement.
Lobby your politicians for better support
Consultation on a UK-wide plan for dealing with rare diseases has been promised by the Government for months but delayed.
Rare Disease UK say “We would be extremely disappointed if the health departments failed to launch the consultation on [Rare Disease] Day, and we would begin to question their commitment to the plan to improve services and facilitate research into rare diseases.”
It has been over 2 years and 9 months since the Government signed the European Recommendation committing them to develop a plan. And it’s been a year since RDUK published recommendations to inform the plan in their report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy
So use the coming of Rare Disease Day to write to your local politician calling for no further delays to the plan. RDUK have been doing this but as their constituent, you have the most influence over them.
Other ways to show your support for Rare Disease Day
- Follow on Twitter: @rarediseaseday.
- Join the Facebook group and event and make your profile picture the Rare Disease Day badge.
- Share the excellent video with friends and family
- Become a friend or share your photos and videos on the website.
Fundraise for Aniridia Network UK
For example Abigail Heather in Durham recently raised £134 by holding a cake sale! Our thanks go out to her.
For more ideas like this visit our Support us web page. Let us know of any plans you make.