Raising awareness is so important for Maffucci Syndrome and Olliers Disease, they are rare diseases with very little information available and very little awareness or understanding of the conditions. It is not just about the awareness of the conditions but in being able to reach individuals, families and others to ensure they have the information and support in relation to these conditions through our website community.
The raising awareness menu includes;
- Media Any media coverage newspapers, television, radio etc that has been shown
- Fundraising Stories of individuals fundraising efforts for these conditions
- Meeting Minutes, videos and information on meetings held in London and Paris
Rare Disease Day 2014
Friday 28th February 2014 is Rare Disease Day, a day for us all to make others aware of all Rare Diseases including Maffucci Syndrome and Olliers Disease and is a day recognised all over the world.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
There are many ways to participate – through work, school, friends and family – however big or small it is about raising awareness for all those living with a Rare Disease.
Activities could include;
- Non-Uniform Day at School or Work
- Baking Cakes
- Post a message on Facebook/Twitter or any other social media website and encourage others to share
- Media/Local Press
- School Assembly
- Display a poster in your School or place of Work