International Costello Syndrome Support Group

International Costello Syndrome Support Group

Charity information

International Costello Syndrome Support Group

We’re an “e-grass-roots” parent support group that shares information about Costello Syndrome (CS) with parents and health providers around the world. Our aim is to gain a to better understanding of Costello Syndrome identify the best practices in treatment for our children. But most of all we provide a support network through which families can share there own experiences and support each other through a mutual understanding.

Founded 2001

  • Mission statement

    We are a family support organization that works to promote early and accurate diagnosis of Costello syndrome, while raising overall awareness of the syndrome, promoting research into the causes and manifestations of the condition. In collaboration with others in the world

    ICSSG mission is to raise awareness of Costello syndrome, provide information, support and advocacy to families affected by Costello syndrome and to support and advocate for Costello syndrome research. All of this to help assure that those with Costello syndrome and their families have the tools and support needed to live lives that are as full and as healthy as possible in order to reach their maximum potential.

    Our work over the past years has included involvement in 7 International family Conferences, and 2 UK family conferences. We have also co-sponsored 2 international research symposiums. As well as being involved in a UK education and training day for medical professionals in the UK

  • Aims

    International Costello Syndrome Support Group aims to:

    • THE RELIEF OF THOSE SUFFERING FROM COSTELLO SYNDROME, BY ESTABLISHING A SUPPORT NETWORK FOR SUCH PERSONS, THEIR FAMILIES AND THEIR CARERS
    • TO ADVANCE THE EDUCATION OF THE PUBLIC IN ALL MATTERS RELATING TO THE ABOVE IN PARTICULAR BY COLLATING AND DISSEMINATING RESEARCH INFORMATION
  • Overview

    Established: February 2001

    Registered Charity Number: 1085605

    Board members: 5

    Phone number: 0161 682 2479

    Address: 90 parkfield road north new moston manchester m40 3rq

    View charity accounts on the Charity Commission website