Useful Twitter Accounts and Facebook Accounts

Like most topics that interest us, there are a huge number of very interesting, and useful, social media accounts and Internet forums that can be a rich and useful source of information regarding 22Q11.2DS

However, as with everything that involves information, the information provided is only as useful as the reliability and authority of the person / organization providing the information.

Whilst not exhaustive, and in no way an endorsement from me, I have found really useful and valuable information from the following people and organizations that have a presence on Twitter, Facebook, the Internet, etc.

Have a look at each yourself and see if any of them is of use to you for the particular type of information, advice, support that you might be interested in.


Twitter (In alphabetical order)

Genetics Education – @geneticsed

Rare Disease Report – @RareDR

Rare Disease UK – @rarediseaseuk

VCFS 22q Foundation – @vcfs22q11

#22qAwarenessDays – @22qAwarenessDay

22q11 Europe – @22q11Europe

22q11.2 Foundation – @22qFoundation

22q11 Ireland – @22q11_Ireland


WWW (In alphabetical order)

Rare Disease | UK is the national alliance for people with rare diseases and all who support them:


Facebook (In alphabetical order)

22q11 Europe – @22q11europeancongress

22Q11 Ireland – @22Q11Ireland