Answering general questions on rare diseases

by Robert Pleticha

The RareConnect team receives many general rare disease questions by email through the contact section of the communities.

For example, What is/are the treatments for paraneoplastic neurological syndrome and how important is prompt treatment?

You can view the full answer we provided by clicking on the link.

Here is a summary of how we responded:

  • Reminded that we are not a healthcare professional and that questions on treatments should ideally be addressed to a healthcare professional.
  • Shared strategies on finding a healthcare professional for your rare disease. You can read more on that topic here.
  • Included a link to the Orphanet article on the disease, which normally mentions treatments in the summary. The only problem here is that those articles are not always updated regularly enough to reflect new research. Make sure to check for year of last update.
  • Sent over the website so they could read about recruiting trials on the disease. Make sure to mention that considering a clinical trial should be discussed with your doctor.
  • Looked for a similar question answered by the Genetic and Rare Disease Information Center information specialists. Guess what? There was one, and its easy to submit your question.

What strategies and websites do you find useful when answering questions on social media, forums, and email?

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