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Peer Support Drop-In Session

Mon 9 Jun 2025 6:30 PM - 7:30 PM BST Online, Zoom

Peer Support Drop-In Session

Mon 9 Jun 2025 6:30 PM - 7:30 PM BST Online, Zoom

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You are warmly invited to join us for for a Peer Support Drop-In session on Monday 9 June at 18:30-19:30.

We know how isolating it can feel to live with a rare disease. We also know how much knowledge and expertise is contained within each and every person with a rare disease. That's why we want to bring together people with EPP/XLP and other skin porphyrias, and their families and friends, to share experiences, challenges, and coping strategies for living with porphyria. 

What is peer support?

Peer support is when people use their own experiences to help each other. There are different types of peer support, but they all aim to:

  • bring together people with shared experiences to support each other
  • provide a space where you feel accepted and understood
  • treat everyone's experiences as being equally important
  • involve both giving and receiving support.

BPA Peer Support Programme

The BPA's Peer Support Programme offers porphyria patients, as well as their family and friends, a safe and welcoming online space where you can join others with EPP/XLP to chat about challenges and gain tips on things that have worked for other families etc. The programme aims to help people living with porphyria to understand their condition, connect with others, build the confidence to take control, and share their story.

The sessions are open to all ages and families affected are encouraged to attend together.

If you have any questions about the event, please get in touch at helpline@porphyria.org.uk.