We're all Joining Jacks fight against Duchenne Musculare Dystrophy, are you?

Experts call for more money to be made available to fund research following a new study into the cost of DMD

We are glad to announce that experts have called for more money to be made available for research into treatments for DMD, after new research has revealed the overwhelming cost of the condition on UK society.

The new study (led by Newcastle University and a team from the Karolinska Institutet in Sweden) has found that the overall cost of care for each individual patient with DMD in the UK is around £71,000 per year - an annual national cost to our economy of roughly £120m. In the UK, the direct cost of DMD is 16 times higher than the average health expenditure per person. These figures include the direct costs of the illness, including treatment such as medical devices, drugs and tests, as well as the cost associated with loss of employment amongst caregivers. In the UK, nearly half (49%) of caregivers have been forced to reduce their working hours or have stopped working completely due to their relative's DMD.

This frightening figure further emphasises the importance of funding research into a treatment for this devastating condition.

Professor Kate Bushby, who led the research, said: "Rare diseases are massively underfunded generally and the cost to society is often hidden as so many costs are borne by the family themselves. Our figures show that DMD imposes a severe economic burden on the family and friends of affected people, as well as society as whole. It is essential that more money is spent trying to find ways of easing this burden on patients and families."

At Joining Jack, we believe that the study should encourage the major decision makers in the government and in drug regulation to push forwards in making funding and treatments available much quicker than they currently are. The hardest thing for me to accept following Jack's diagnosis was that there was no treatment available, but there was a pipeline of promising potential therapies, which gave us hope. These potential treatments have been shown to slow down or stop the progression of the disease. Both of these are extremely important for patients. My son is 6 years old and can still walk. To slow down the progression of the disease would mean he can stay walking for much longer which will hugely improve his quality of life and greatly reduce the costs of caring for him for our family and the NHS.

This is an important moment for the government, regulators, NHS and NICE to review this report and realize the severity of the condition and make funding and treatments available as quickly as possible to help improve the lives of patients who are otherwise degenerating and have no therapy available.

The study has been published today in medical journal Neurology - please follow the link to read more about it: http://www.treat-nmd.eu/dmd/publications/burden/