HOLT-ORAM SYNDROME SUPPORT GROUPHolt-Oram Syndrome is the name of a hereditary condition that affects a
person's heart and upper limbs. It is caused by a faulty gene and there is a
wide range of severity of symptoms. The Holt-Oram Syndrome Support Group has
the following aims: - To encourage contact between affected families enabling the sharing of
experiences and problems.
- To offer information on counselling and other sources of help including
benefits, appropriate statutory and voluntary agencies, aids and equipment and
the location of practical local help.
- To provide information on the progress of research into the syndrome.
- To raise awareness of the syndrome within medical, social and voluntary
organisations.
The Support Group maintains a list of families who are willing to be
contacts for newly affected families. It also organises an annual meeting to
provide a forum for discussion between affected families as well as between
group members and healthcare professionals. The Group produces a booklet,Helping those who have to cope, which includes sections on genetics,
cardiac problems, skeletal defects and further details on the support group
itself.
Holt-Oram Syndrome Support Group
21 Forth Road
Redcar
Cleveland
TS10 1PN  01642 501283
 01642 501283
 http://www.btinternet.com/~holt.oram/holt.oram.htm
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