Terms of Reference


1. The group shall be an informal network of professionals from the UK and Republic of Ireland whose aim is to share and disseminate information about the medical aspects of Down syndrome.

2. The group shall promote interest in the specialist management of the syndrome by:

  • holding regular scientific meetings which will include research reports; presentations on specialist topics; case presentations and discussion.
  • facilitating informal networking and information sharing.

3. The group shall disseminate information to other doctors, non medical health professionals, parents and carers by:

  • establishing an information service for health care professionals about the medical aspects of Down syndrome and about some aspects of individual local medical services in the UK.
  • promoting occasional national scientific meetings and conferences.
  • developing and maintaining guidelines on best medical practice.
  • individual discussion.

4. The primary focus of the group shall be children with Down syndrome but there is a hope that the group may serve as a stimulus for the formation of a network concerned with medical issues in adults with Down syndrome.

5. The group shall liaise as appropriate with medical interest groups in other countries.

6. The group shall seek funding to cover basic secretarial and administration costs and, where necessary, members’ expenses in attending meetings.


1. Membership is open to healthcare professionals with a specialist interest in Down Syndrome.

2. The Steering Committee shall consist of a minimum of a chairman, meetings convenor, secretary and treasurer, and shall be elected.

3. An annual membership fee shall be set by the steering group


1. Steering group meetings shall be held at regular intervals.

2. Educational Symposia shall be held a twice a year, in the Spring and Autumn

3. Larger meetings in conduction with other organisations shall be held from time to time.