Roadmap Rare diagnosis Staying Up To Date
Back to roadmapHow to search for information about a rare condition
Searching for accurate and reliable information about a rare disease among many online sources can be a very difficult task.
There are guides available to help with the process of searching the scientific literature and how to assess the quality of the information you find. Reviewing publications can help determine whether specific management recommendations and treatments are available or in development, identify gaps in research and check if there are experts with experience in your condition.
Resources
- https://pubmed.ncbi.nlm.nih.gov/
- https://www.ncbi.nlm.nih.gov/books/NBK1116/
- https://www.findresources.co.uk/welcome-to-find
Suggest a resource: send email to gcwg@udninternational.org