In response to the needs of the families we support, we established the ED Society Support Fund to provide small grants to fund equipment, treatment or care needs deemed to be essential to the wellbeing of the member who is affected by one of the Ectodermal Dysplasias.
A small grant could help purchase any of the following needs:
- Air conditioning unit/fans
- Cooling pads
- Cooling clothing
- Assistance with travel to medical specialists (on application) within the UK
- Wigs/hair pieces
- Any other appropriate support deemed applicable by the ED Society.
Who may apply?
All members resident in the UK and over the age of 18 may apply on behalf of either themselves or their dependants providing such person has an Ectodermal Dysplasia syndrome.
To apply for such funds, an individual or parent must have been a member of the ED Society for two consecutive years and paid membership fees. You will then need to submit an application form to the ED Society, together with any documentation specified below and in the accompanying ED Society Guidance and Policy document. The level of funding provided will follow the established guidelines of the ED Society Executive Committee.
All payments will be made directly to the provider of such equipment, treatment or care needs. In addition to this application form, all applicants must:
- Submit evidence in the form of a letter from the doctor, dentist or medical specialist confirming the diagnosis of an Ectodermal Dysplasia.
- Submit a letter confirming the need for the Applicants request.
- Submit proof of low income in the form of a letter from the DWP stating that you are eligible for Income Support, Working Tax Credit or Housing Benefit if applicable.
- Submit a copy of a written quotation or estimate of the costs from the care provider, manufacturer, supplier etc., for the equipment, treatment or care need.
- Include a recent photograph of the individual for whom this application is being made.
- Be a UK member of the ED Society for two consecutive years.
- Have a completed symptoms questionnaire on file at the ED Society office.
If you have any questions, please contact the ED Society 01212 261332 or email us.