Rare Disease Day is about raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. This year, it is being observed on 29th February – the rarest day of the year.
Did you know….
- 300 million people worldwide live with a rare disease (1 in 17 people)
- There are over 6000 different rare diseases.
- 72% of rare diseases are genetic.
- 70% of these genetic rare diseases begin in childhood.
Have you heard of Genomic Medicine?
The Liverpool Centre for Genomic Medicine (LCGM) is the regional genetics service serving the Cheshire and Merseyside region, and the Isle of Man.
Where is LCGM based?
LCGM is based right here in Liverpool Women’s Hospital, although they have clinics across a number of areas including Chester, Wirral, Crewe, Ormskirk and Warrington.
Who do you see at LCGM?
LCGM see adults, children, and their families, for a number of reasons. There may be a genetic diagnosis in the family, or suspicion of a genetic condition.
We also see patients with a personal or family history of cancer, and pregnant people who have a chance of having a baby with a genetic condition.
People with a confirmed or suspected personal or family history of a genetic condition and people with a family history of cancer may be eligible to be seen in genetics.
How can I find out more?
You can learn more about LCGM at: https://www.liverpoolwomens.nhs.uk/our-services/liverpool-centre-for-genomic-medicine-lcgm/
If you think you or your family should be seen in Genetics, please discuss this with your GP or any of the healthcare professionals looking after you.
Get involved with Rare Disease Day 2024
Below are a number of ways that you can get involved in Rare Disease Day 2024
Share your story
You are invited to share your story with others and send a message of solidarity on the Rare Disease Day webpage: https://www.rarediseaseday.org/share-your-story/
Lights up for Rare Diseases Day
The Royal Liver building, Liverpool Town Hall, and the Mersey Gateway Bridge will all be illuminated on 29th February 2024 for Rare Disease Day
#LightUpForRare
Everyone can participate in the Global Chain of Lights and Share Your Colours!
In an effort of global solidarity, you are invited to light or decorate your home with the Rare Disease Day colours at 7 PM your local time on 29 February 2024.
You can use garlands, social media filters, candles, disco lamps, colourful decorations… Let your creativity shine!
We suggest you take a picture of yourself with the illuminations or decorations you chose and publish it on your social media using our “Global Chain of Light” filters and #rarediseaseday.
RARE/D
“RARE” is a project which aims to stimulate and capture public conversation about one of the biggest changes in how we think about health – what does it mean to have a rare condition and how we all may become “RARE” when genomics becomes part of mainstream healthcare. The group has a shared interest in the definition of ‘rare’ and what that means to us all.
On International Rare Disease Day, RARE are asking people around the world to capture a simple clip of something that means rare to them, and be part of a collective, crowd-generated film. They also have a series of podcasts, all accessible on the Rare/D website.
See https://www.rarediseaseday.org for more information about Rare Disease Day 2024