Contacts
For enquiries please call the Barth Syndrome Administrator on
0117 3428102 or the Clinical Nurse Specialist on 07795507294, who
can direct your call to the appropriate members of the
team.
To contact a member of the team directly, please use the contact
details below.
Useful links
Barth Syndrome Trust (UK)
The Barth Syndrome Trust offers support to
patients and their families, access to latest information from
around the world, a regular newsletter and invitation to the
international conference held every two years in the USA and
organised by the Barth Syndrome Foundation (USA).
Barth Syndrome Foundation (USA)
The Barth Syndrome Foundation (BSF) was the
first charity established to help patients and families across the
World affected by Barth Syndrome. Based in the USA, BSF organises
an international conference, which acts as the major focal point
for families. BSF and BST fund many research projects looking into
the scientific basis and new treatments for the disease. Dr Steward
is a member of the Scientific & Medical Advisory Board of
BSF.
Cardiomyopathy Association
The Cardiomyopathy Association helps sufferers, their families,
and their medical advisors to best manage the impact of
cardiomyopathy.
Children's Heart Federation
CHF is a federation of support groups in the UK and Ireland for
families with (or expecting) a child with a heart condition.
GUCH
Grown Up Congenital Heart patients Association (GUCH) provide
support for families and patients suffering from
cardiomyopathy.
The Miscarriage Association
The Miscarriage Association acknowledges the distress associated
with pregnancy loss and strives to make a positive difference to
those whom it affects.
SANDS
SANDS is an organisation which can offer support to parents
whose baby has died during pregnancy or after birth. Many of the
staff of SANDS have been through this experience themselves, and
are able to offer support and information.
