Resources

World Duchenne Awareness Day

5 September 2017

Thursday 7 September 2017 is World Duchenne Awareness Day, and the Rare Disease Research Group at THE PLANNING SHOP is going to support the event, alongside the European Parliament, Pope Francis, and many organisations across 40 countries.

About World Duchenne Awareness Day

One in 3,500 newborn boys in the world is affected by a rare and fatal disease: Duchenne Muscular Dystrophy (DMD). DMD is the most common fatal genetic disease diagnosed in childhood. The disease almost always affects boys, and they tend to be diagnosed before the age of five. There are around 2,500 patients in the UK and an estimated 300,000 sufferers worldwide. Children born with DMD have a mutation, on their dystrophin gene, the longest gene in the body. The fault means that they cannot produce dystrophin, a protein that is vital for muscle strength and function. This lack of dystrophin results in a progressive deterioration of muscle strength and function. This video explains the disease very well.

Even though the number of sufferers worldwide seems like a small group, the patients around the globe think big and have big dreams, and World Duchenne Awareness Day was set up to inform and educate people about the disease, and to raise money to guarantee access to care, to improve research, to educate patients and families.

Our support for World Duchenne Awareness Day

As a market research company with a specialised Rare Disease Research Group, THE PLANNING SHOP is showing support for people affected by the disease. To mark the occasion we have launched a red Duchenne Balloon, and we will also be encouraging our team members to wear red, take part in a red wine tasting session and eat red velvet cake on Thursday. We hope to raise funds for DMD through these activities.

Please find out more about DMD here and join us in helping to raise awareness of this devastating disease.