Rare Diseases
Our fab volunteers are still putting this page together, however we have made a start...
What is disease?
There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world, each supported by family, friends and a team of carers that make up the rare disease community.
Each rare disease may only affect a small number of people, scattered around the world, but taken together the number of people directly affected is equivalent to the population of the world’s third largest country. Rare diseases affect 3.5% - 5.9% of the worldwide population.
72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 70% of those genetic rare diseases start in childhood. In most areas of the world, a disease is defined as rare when it affects fewer than 1 in 2,000 people.
Challenges faced by those with a rare disease include:
The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease but also from patient to patient suffering from the same disease.
Research needs to be international to ensure that experts, researchers and clinicians are connected
Extract from the Rare Disease Day website
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A disease known is half cured.
Thomas Fuller
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Programme ideas
Squirrels, Beavers and Cubs
Finger Prints
Every child dips one finger into a stamp pad (child-friendly paints/ink could be used as a substitute) and presses it onto a piece of paper. Afterwards, children compare their fingerprints with a magnifying glass (if one is available). The children should come to the conclusion that each fingerprint is unique. Try to use this analogy to help make a connection to health and rare diseases, how no two people are exactly the same and that difference is to be expected. Make sure you include allergies when writing the risk assessment for this activity.
Coughs and sneezes
Activity to see how quickly germs spread if you don't wash your hands
Cubs, Scouts, Explorers
Choose a Rare Disease Charity to support as a group. Learn about the condition and how it affects the life of sufferers. Raise awareness and fundraise for the charity. Make sure you risk assess any fundraising activities. Use this link to Rare Disease UK to see a list of affiliated charities:
Badge links
Check all the badge requirements at https://www.scouts.org.uk/information-for-parents/scout-badges
rarediseaseday.org
Rare Disease Day UK
Fun & Games
Scouts & Explorers
What disease relay
Download the Diseases Cards (below) and cut them up. Sort the young people into teams of no more than 6. Assign the numbers 1-6 to each young person in their team. They all line up in their teams at one end of the meeting hall. Opposite each team, place a set of cards on a chair at the other end of the meeting hall. Start the game by rolling a 1-6 dice. Whichever number comes up, the young person with that number runs up to their team's chair and picks up one card at random and returns it to their team. Repeat rolling the dice until all the cards have been collected. Teams must then correctly match the name of the diseases with the definition. The first team to do this is the winner. Make sure you do a risk assessment for this game that relates to your meeting hall and your young people's needs.