Who we are
The Thalidomide Society was formed in 1962 by parents of children with congenital disabilities caused by the drug commonly known as thalidomide. Forty years later, the Society is still supporting its now adult thalidomide-impaired members and their families.
The Society is a user-led organisation and the majority of the Board of Trustees is made up of thalidomide-impaired people.
What we do
The Thalidomide Society provides assistance and advice enabling its members to meet, exchange information, share experiences, and tackle the practical and emotional problems they encounter on a daily basis.
One way we do this is by producing a regular newsletter, which is sent to all thalidomide-impaired people. Click here to read the latest newsletter online.
The Society liaises with the press, government departments, and other organisations to raise awareness of the concerns of thalidomide-impaired people and others with similar disabilities.
We also monitor and advise on the increasing use of thalidomide for certain diseases and conditions. The Thalidomide Society’s view is that thalidomide is a drug of ‘last resort’. Its use should be carefully monitored, and the guidelines already in existence should be carefully followed.
Many thalidomide-impaired people are now working and most are living independently or with partners and children. The Society is keen to pass on the practical, social and psychological knowledge and expertise of members to parents of children with similar disabilities and professionals working with similarly impaired young people.
Funding Our Achievements
To fund its activities, the Society depends mainly upon individual donations, legacies, corporate donations and the investment income derived from such receipts. It has also received funds from time to time from government or other grant-making bodies, some of which are described below.
Department of Health
A major grant in 1995 gave us three-year funding to carry out a wide range of activities including:
- Providing information to statutory and voluntary bodies, and the general public
- Setting up workshop sessions, seminars and self-help groups
- Giving support and advice to families with similarly disabled children
- Expanding the Society’s international links
We used a grant from the Community Fund in 1997 to produce a video on the lives of thalidomide-impaired people.
A further grant from the Fund enabled the Society to undertake research into the health quality of life of thalidomide-impaired people. The project was carried out in partnership with the College of Health and was completed in 2002. The results have been disseminated widely and copies of the summary have been distributed to all thalidomide-impaired people. Click here to read the summary online.
Find out more
For further information on thalidomide, its effects, and the activities of the Thalidomide Society , please contact us.
The Society depends in part upon individual donations and legacies to fund its work. If you would like to help us in this way and would like more information, please contact us.
The Thalidomide Society is a registered national charity, number 231708. It is also a company limited by guarantee, registration number 770036.
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