Finding medical information

4 mins read

This advice applies across the UK.

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 this article

Finding information online

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 certain condition.

You should avoid giving out your personal contact details on the internet.

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.

Tips to help you judge quality

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 2022 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 information accurate.

Medical websites you might find useful

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 You will still need to check dates of publication to ensure the information is relevant and not outdated.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
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.

National 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.

Great 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 organisations.

NHS website
The NHS website 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.

Other sources of information

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 a closed Facebook group, where you can share experiences with other families.

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.