Don’t struggle on your own—We are here to help


If you ever have any troubles or queries, we are always here to help our ED Families.  Please do not hesitate to get in touch with us –

What We Can Do For You – 

  • write individual personal reports for your doctors and schools etc.
  • assist by writing letters and reports to help regarding rehousing
  • write appeal letters for DLA or PIP
  • assist when applying for a Blue Badge
  • assist when applying for an Education Health Care Plan (EHCP)
  • provide a School Health Plan specific to ED
  • ensure schools are providing the correct care for your child such as a fan, drinking water at all times, etc., by providing letters, and liaising with SENCO and the school
  • attend tribunals and school meetings with you
  • liaise with dentists or provide you with information to ensure you are not continually made to wait until your child is older before any treatment is carried out
  • ensure you have been given all the dental options for you or your child allowing you to make informed decisions; we have a dental network around the UK
  • talk with you via telephone or email regarding the symptoms of ED
  • provide t-shirts and support for fundraising activities you may be carrying out for us
  • liaise with medical professionals for assistance and advice on your or your child’s care
  • discuss genetics with you or your adult children to help informed decisions to be made
  • provide an annual get together such as the Christmas party for families to get to know each other and to have the opportunity of speaking with the Medical Advisory Board on a personal basis
  • assist with the transition to University and Student Disability Finance
  • we have a Facebook page to help you speak with others who have experience of ED
  • talk with you regarding lack of temperature control and behavioural problems which, for many individuals with ED, are connected.

The list goes on …… if we do not have the answers for you we will find them!