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