C/o Contact a Family
209 - 211 City Road
London
EC1V 1JN

Tel: 01794 518 785
E-mail: info@barthsyndrome.org.uk
Website: www.barthsyndrome.org.uk

Description:
Barth Syndrome is a rare, metabolic and neuromuscular, genetic disorder that occurs exclusively in males, since it is passed from mother to son through the X chromosome. Although barth syndrome typically becomes apparent during infancy or early childhood, the age of onset, associated symptoms and findings, and disease course varies considerably, even among affected members of the same family (kindred)

Aims:

• To increase awareness amongst physicians and the general public both to facilitate accurate diagnosis and to provide continuing support to affected families after diagnosis.
• To put families in touch with each other and will share information and experiences both regional and internationally.

Activities:

• The Barth Syndrome Trust works together with the Barth Syndrome Foundation and all other affiliated organisations throughout the world.
• Together, they continue to generate a positive force to ensure that "not one child will suffer or perish from Barth Syndrome".

Membership:
Free

Updated 12/03/08

DIAL Disclaimer
Whilst all the information given in this document was correct at the time of going to press, DIAL Doncaster cannot be held responsible for any subsequent changes.

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