The following organizations work on research, policy, and advocacy on behalf of their populations.
If you are looking for more information than these websites provide, try searching for a non-profit medical or patient association related to the disease you are interested in.
For example, the Alzheimer's Society of Canada would have a lot of reliable information for Alzheimer patients, medical practitioners and family members.
Grey Literature is information published outside the usual streams of academic publishing, but may still contain valuable, high quality information.
Examples include reports, research or working papers from:
In addition to traditional report/research articles, you can also find thesis and dissertations, audits, standards, regulations, professional guidelines and benchmarks, summaries of clinical trials or other research, surveys, policy & procedure documentation and conference proceedings.
Often the best approach to finding this grey literature is using Google's Advanced Search interface.
Think about who might be interested in gathering information on your particular topic, and what words may appear in their websites or documentation.
Some Advanced Google Search suggestions:
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