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PKD Online Groups & Social Media

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The PKD Charity uses a number of social media channels and networks, and online support communities and groups, and recommends a few groups hosted by third parties.


We have a public Facebook Page: Click here to Like the PKD Charity Facebook page.

The PKD Charity manages and moderates three Facebook groups:

PKD Charity UK Group (closed and for UK only members)

Parents of Children with PKD (closed and UK only members)

ARPKD Support Group (private and UK only members)


HealthUnlocked Communities (UK only)

Large network of health and social care communities, linked to NHS England.

The ADPKD Community

The ARPKD Community


If you tweet, follow the PKD Twitter feed for instant messages and news about research, events and fundraising.

For help and guidance online, please read the PKD Charity Policy on Social Media and Online Communities.

Medical disclaimer: Content published on social media and online communities is not meant as a substitute for professional medical advice. You must consult your GP, hospital consultant, pharmacist or other health/social care professional if you have any concerns about your health or social situation.


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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website
  • KPIN