Emily writes for The Patient Group Handbook

Our Founder and Director Emily Crossley has written a chapter for The Patient Group Handbook, edited by our Scientific Advisor Tony Hall. This new book is all about how to get the best out of a patient group, how to set one up, fund and promote research, and work with scientists and industry. In fact, everything that we at the Duchenne Children's Trust have always tried to do. Emily's chapter is all about setting up a patient group.

Here are her Top Ten things to do:

  • Get as much expert advice as you can before you set up - and keep getting it
  • Define your mission and set your goals
  • Find strong and supportive Trustees, Patrons and Friends
  • Create a brand, a website and embrace social media
  • Register as a charity
  • Set up efficient financial and business procedures from the outset
  • Ensure that someone in the group understands about all aspects of communication and keep in touch with your donors
  • Keep up to date with the science that is happening in your group’s specific arena and form links with groups working within the same field
  • Develop a fundraising strategy that includes events, grant applications and a network of Friends who will set up their own fundraising activities to support you
  • Stay strong and never stop believing that you can make a difference.


Published on 3 March 2016

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