In Contact a Family's experience, individuals, parents and professional workers frequently need to know about specific conditions and rare disorders and the related support organisations. Through the publication of The Contact a Family Directory, Contact a Family is addressing this need.

Contact a Family maintains a database of a substantial number of specific conditions and rare disorders in addition to those listed in The Contact a Family Directory. Therefore if individuals, parents or professionals wish to enquire about a particular condition for which there is no entry in The Contact a Family Directory it is worth contacting our freephone Helpline, Tel: 0808 808 3555 Text: 0808 808 3556 or e-mail. For all other enquirers, call Contact a Family's UK office, Tel: 020 7608 8700 and you will be directed to the relevant Information Officer.

Each entry contains a short medical description of the condition together with details of inheritance patterns and prenatal diagnosis. This information is followed by details of the related support networks: their activities, publications, and what they offer to families. It should be noted that some groups are very small and are run by individuals or parents who offer one-to-one linking and mutual support between families. Some of the listed Contact Groups prefer to be reached in the first instance through Contact a Family. If users of The Contact a Family Directory have difficulty in contacting a support group, please telephone Contact a Family, Tel: 020 7608 8700.

Subscriptions are available for the paperback, CD-ROM and website versions of this resource.

Directory entries on this website can be accessed via our Index of Conditions

Rare Eye Conditions Directory

Contact a Family has also published a Contact a Family Rare Eye Conditions Directory. This publication contains descriptions of over 60 specific eye conditions or syndromes which have eye involvement.

The Rare Eye Directory is modelled on the highly respected main Contact a Family Directory which now has over 400 entries. All condition descriptions are written by expert doctors or when drafted by Contact a Family carefully checked by experts. Contact a Family places great importance on the provision of up to date accurate information for individuals, families, carers and professional advisers, and on signposts to effective support organisations.

As well as the alphabetical entries with the descriptions of conditions and contact details for support groups, the directory contains sections on:

• Patterns of Inheritance - many of the entries are heritable;
• Contact details for the UK's Regional Genetics Centres;
• Dictionaries and glossaries - both specific to eye conditions and general information;
• Benefits and other forms of financial help for people with visual impairment or sight loss;
• Extensive details of General Visual Impairment and Other Helpful Organisations;
• How to find up to date details of Local Visual Impairment Organisations.

We are very pleased that Contact a Family's Medical Advisory Panel member for visual disorders, Miss Isabelle Russell-Eggitt, FRCS FRCOppth, Consultant Ophthalmologist at Great Ormond Street Hospital, has agreed to be the main advisor to the Contact a Family Rare Eye Conditions Directory. Professor Michael Patton, Professor of Medical Genetics at St George's Hospital Medical School, who has helped Contact a Family maintain the high standards of the main Contact a Family Directory since its inception in 1991 continues to help with the new Directory.

It is only available in printed format. To order your copy please visit the Contact a Family Shop