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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.

Facebook

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

The PKD Charity manages and moderates a number of Facebook groups:

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

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

PKD in Young People (closed and UK only members)

PKD Northwest Group (closed and UK only members)

There are many Facebook groups that have been established by people affected by PKD around the world. Here are the ones that we know best:

Polycystic Liver Disease Support Group

ARPKD

ARPKD/CHF Alliance

PKD Yahoo Group

This group has been running for many years; the members are caring and well-informed. This Group is moderated by the charity. Find out more and join the PKD Yahoo Group.

HealthUnlocked Communities (UK only)

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

The ADPKD Community

The ARPKD Community

Twitter

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 The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • National Voices Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website