Our next FREE Patient Information Day will be in London on Saturday 14th March 2020

Address: Tower Lecture Theatre (entry via 29th Floor), Guy’s Hospital, London SE1 9RT

CLICK HERE TO VIEW THE DRAFT AGENDA


Our information days are for parents and caregivers to get updates on DMD research, clinical trials and care considerations for DMD, to make sure you have the most up to date information on caring for your child. There will also be lots of opportunity to meet other parents.

Spaces are limited therefore we ask that ONLY parents and caregivers register for tickets using the form below.  If you are not a parent or caregiver of a child with Duchenne, but would like to attend, please do not register for a Parent/Caregiver ticket email: [email protected] to request a ticket.

Unfortunately, we are unable to provide childcare

CLICK HERE to read more information about the day and our previous events.




NOTES

What is Duchenne Muscular Dystrophy?

Duchenne Muscular Dystrophy is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.

Who are Duchenne UK?

Duchenne UK is a lean, ambitious and highly focused charity with a clear vision: to fund and accelerate treatments and a cure for Duchenne muscular dystrophy. The charity has been formed by the coming together of Joining Jack and Duchenne Children's Trust, the two biggest funders of research in the UK in the last three years. Its president is HRH The Duchess of Cornwall. Its patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell. 

How to donate?

Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:

  • Direct Debit – Duchenne Direct
  • Individual Donation – Donate
  • If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
  • Take part in one of our fundraising events – Events
  • Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.

For more information visit www.duchenneuk.org