CdLS World federation


CdLS World federation


In many countries the parents/carers of people with Cornelia de Lange Syndrome (CdLS) have formed national groups with the aim of supporting people with CdLS.  They have found that they share a mission – to offer help, give hope and reach out to people with CdLS and those who love and care for them.

In Los Angeles, California in 2001 the national groups of many of those countries formed an association named the International Federation of National CdLS Support Groups to further that shared mission.

The objectives of the Federation are:

  • to liaise with the International Scientific Advisory Committee (‘SAC’) and to manage the SAC for the benefit of all member countries
  • to act as a forum of best practice for support group services for people with CdLS, including holding an International Conference every two years
  • to act as a resource base for the wider family of people affected by CdLS throughout the world for both research and for families moving from one country to another.

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