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(click on the appropriate letter to go to that section)
We offer up
to date information in a non technical language, including brief summaries
to pass onto family, schools, and friends. We also offer technical
information available to doctors and healthcare professionals.
Our Information Research Officer keeps the information that we hold on over
700 disorders up to date using a wide range of resources. Each of our
supported disorders has an information pack which contains technical
information for professionals and un-technical information for families
which may include family stories and information such as dietary needs and
what do in an emergency. Each pack also comes with a summary which is
written using the information taken from the individual packs and broken
down into a family friendly leaflet. We invite any queries about the
information in the packs and summaries. All queries are responded to within
three days and where needed a specialist will be contacted to ensure that we
are passing the correct information on whilst maintaining a high level of
confidentiality.
A good working relationship has been established with a wide range of
specialists in many areas of metabolic disease. We also keep a good level of
contact with pharmaceutical companies. These contacts mean that we are able
to respond to more technical queries with the aid of specialist knowledge
and locate specialists more easily for families to be referred to. Working
relationships with specialists and pharmaceutical companies also mean we are
able to keep up to date with the latest research and new products and
developments. We pass this knowledge on through our Climb E-News, an email
newsletter that is sent out bi-monthly to a growing list of recipients.
Inherited Metabolic Disease information in URDU -
Here
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