The Ectodermal Dysplasia Society aims to promote awareness and understanding of the Ectodermal Dysplasias by providing detailed information and practical advice to those individuals and families affected by Ectodermal Dysplasia, and to the medical professionals, local authorities, etc., who support them in living life to the full.
The ED Society aim to:
- be the first port of call for all those seeking information on the Ectodermal Dysplasias
- provide personalised support to individuals and families affected by Ectodermal Dysplasia and provide personalised guidance to authorities in the UK (e.g. schools, social services, etc.) seeking to understand how to manage the effects of Ectodermal Dysplasia on individuals and families in their community
- raise the awareness of Ectodermal Dysplasia within the medical profession and other community officials in the UK (e.g. health visitors, social workers, etc.) in order to promote early diagnosis of babies and children with life-threatening symptoms Ectodermal Dysplasia (e.g. over-heating, breathing difficulties, feeding difficulties, etc.)
Vision (What we want to be)
Our vision is that every individual and family affected by Ectodermal Dysplasia is equipped with the knowledge needed to manage Ectodermal Dysplasia effectively and live life to the full; and that medical professionals have the information and understanding they need to support those affected.
The ED Society seeks to raise funds to provide support services, equipment and grants to families affected by Ectodermal Dysplasia in the UK.
Strategy (How we will make this happen)
The work of the ED Society will be guided by 6 strategic objectives.
- Communication – To make available information that is clearly written and easy to understand on the different Ectodermal Dysplasias, together with practical advice on how to manage their affects
- Database – To build a solid membership database of both those individuals and families affected by Ectodermal Dysplasia, and of those medical professionals with an interest in or experience of treating such individuals and families
- Liaison & Support – To liaise with individuals, families, professionals and members of the Medical Advisory Board with the aim of providing personal support and advice to those affected by Ectodermal Dysplasia
- Contact Network – To build relationships between individuals and families affected by Ectodermal Dysplasia to encourage mutual, practical and emotional support
- Raising Awareness – To promote awareness and understanding of Ectodermal Dysplasia to both the medical profession and the general public
- Fundraising – To raise funds to support the Ectodermal Dysplasia Society in its work to provide services, equipment and grants to individuals and families affected by Ectodermal Dysplasia.