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THE XLH NETWORK AIMS AND
OBJECTIVES
The XLH Network is an emerging
patient support and information-presenting organisation, and
as such, aims to facilitate mutually supportive information
exchanges among those concerned with the XLH syndrome.
Initiated in the summer of 1996, the organisation has grown
to some 200 members in the intervening years, linking
families affected with XLH as well as biomedical
researchers, clinicians and carers concerned with this
syndrome. Members typically subscribe to the free
internet-based mailing list (F-HYPDRR
), and share a valuable experience and best
practise database.
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WHERE IS THIS PAGE COMING FROM?
These information and support pages are served
from the desk of:
Larry Winger, PhD, PGCE
Senior Research Associate
Clinical
Biochemistry
University of
Newcastle upon Tyne
NE2 4HH
Telephone: +44(0)191 222 6000 x8549
FAX: +44(0)191 222 6227
Email:
Larry.Winger@ncl.ac.uk
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THE XLH NETWORK CONTACT DETAILS:
Elpha Green Cottage, Sparty Lea, Allendale,
Hexham, Northumberland, United Kingdom, NE47 9UT
Telephone: +44(0)1434 685047
FAX: +44(0)1434 685181
Webmaster: Larry.Winger@ncl.ac.uk
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UMBRELLA ORGANISATIONS WITH RECIPROCAL LINKS TO
THESE PAGES
Rare
Genetic Diseases in Children
OrphaNet
National
(USA) Organisation for Rare Disorders
Genetic
Alliance (USA)
Contact a
Family (UK)
The XLH Network is also a new member of the
Genetic Interest Group
(UK)
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