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The National Information Centre for Metabolic Diseases |
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Information Research
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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.
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