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Rare Chat RSVP

Rare Chat at NIRDP (Northern Ireland Rare Disease Partnership) is a regular, informal online discussion space created to support, connect, and amplify the voices of people affected by rare diseases in Northern Ireland.

Here's what Rare Chat is all about:

  • A Safe, Supportive Space: Rare Chat provides a welcoming environment for individuals and families living with rare conditions to share their experiences, ask questions, and offer mutual support.

  • Monthly Conversations: Held once a month (e.g., the next session is on June 30th), Rare Chat focuses on different themes or specific rare conditions, aiming to raise awareness and understanding.

  • Community-Led: Whether you are living with a rare disease, caring for someone who is, or working in healthcare, Rare Chat is open to you. Participants can engage in open conversation or simply listen in — whatever feels comfortable.

  • Amplifying Voices: It's also a platform for NIRDP to gather insights, identify unmet needs, and promote advocacy based on lived experiences.

  • Easy to Join: Sessions are free and held online, with registration links typically shared via NIRDP’s social media and website (usually linked in their bio or posts).

  • Easy Access: Rare Chat is hosted via Zoom, and the link is shared with you once you register. Sessions are free and open to anyone who wants to join the conversation.

Email Address (for Zoom link): *
Can you attend? *

Are you attending as:

 *
What are the names of people attending? *
How did you hear about this event? *

 Which rare condition(s) are you connected to, if any?

 *

Do you have any questions or topics you'd like discussed during Rare Chat?

 Would you like to receive updates from NIRDP about future events and news? *
Comments and/or questions or Rare Chat
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