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If you're using the internet to find information about medical conditions, you
will need to carefully evaluate what you find. Not all online
information is accurate and trustworthy.
In general it is important to remember the same condition can
affect individuals in very different ways. Information may reflect
the most severe cases and not always apply to every child with a
You should avoid giving out your personal contact details on the
Any information that is found as part of an internet search
should be discussed with a medical professional to see how it
relates to your child.
These tips will help you decide if the information is suitable
to your needs:
For example, Contact medical texts carry endorsements in
the following form:
Last updated February 2015 by Dr R Gibbons, Professor of
Clinical Genetics, Weatherall Institute of Molecular Medicine, John
Radcliffe Hospital, Oxford, UK.
Read more about how we keep our medical
Below you can find a list of resources where you can search for
information that conforms to quality criteria. You will still need
to check dates of publication to ensure the information is relevant
and not outdated.
Contact's medical information
We hold information on hundreds of medical conditions, including
rare disorders and contact details for UK support groups. All
entries are approved by a medical expert.
Medline Plus hosts the ADAM medical encyclopaedia with more than
4,000 articles about diseases, tests, symptoms, injuries and
surgeries. Content is verified by medical professionals.
Organization for Rare Disorders (NORD)
NORD gives access to reliable information on a huge range of
disorders as well as the networks that support the disorder. This
is an American site, but is very useful where there is no
equivalent UK support network.
Ormond Street Hospital for Children
GOSH has a large number of information sheets covering a wide
range of conditions, treatments and medications. All have been
written by health professionals and are regularly updated.
Provides a searchable database of rare disorders, information on
orphan drugs, clinical trials, diagnostic tests and patient
NHS Choices is a site providing information on conditions,
treatments, local medical services and healthy living.
Doctor-verified information on health, lifestyle, disease and
related topics as well information on drug treatments.
Search engines, like Google or Yahoo, are designed to look for
information on the internet. Be advised that a search engine will
not rate the quality or accuracy of your search results.
'My story sites' are written by individuals who have a child
with a medical condition. Some of these sites have excellent links
to information, but be aware that any medical advice you find might
be specific to that individual.
Online groups or support forums can be a good way to get in
touch with other parents. Most people using these sites will be
genuine, but some people may have extreme or inaccurate views.
Contact has an online
community, where users can get in touch with one another
without having to give out personal contact details.
Support groups for specific
conditions may produce information about that condition. Use our
tips above to make sure the information has been written by a
medical professional and that the date and author are listed.