Introduction

Introduction

Organisation Name
Wolf Hirschhorn Syndrome Support Group
Description

A support group that helps parents with children with Wolf Hirschhorn Syndrome (WHS) by putting them in touch with each other. Also Liaise with doctors and professionals doing research into this condition. A national meeting is held once every two years and a newsletter is sent to members quarterly.

The group offers advice, support and friendship to anyone with an interest in Wolf Hirschhorn Syndrome and website with message board. The diagnosis of Wolf syndrome is made when blood has been taken from a newborn baby to try to discover why he or she has a number of unusual physical features. If a baby is found to be lighter than expected or to have a shape of face very different from the parents, a close examination may show a number of other variations. There may be unusually shaped ears, hands or genitalia and there may be evidence of defects in the heart or palate.

This organisation provides support around
Personal Health Services Emotional Support
This organisation provides support for
Disabled People Families Parents
Regions
South Gloucestershire Bristol Bath and North East Somerset North Somerset Somerset
Is there a cost for these services?
No
How can people access this service?
Drop-In

Primary Organisation Details

Primary Address Details

Address 1
Bungalow 2
Address 2
Pettycur Bay Holiday Park
Town
Kinghorn
County
Fife
Postcode
KY3 9YE

Organisation Contact Methods

Telephone

Services

Helpline Details

Will calls I make to this helpline show on my bill?
N/A

Reviews

To add your review, please log in or register.

What other people have said

This organisation has been rated (by 0 users)

Back to search results
Thumb original

My Favourites

Favourites are stored until you quit your browser. Please create an account or login to store your favourites permanently.

Printable Version