XLH Connect

We know what it’s like to live with XLH. Our community is a valuable source of information and support. From tips and tricks to a listening ear, meeting others from our community can be a source of comfort or inspiration.

Following requests to have more opportunities to meet others in the community, alongside Family Days and the Facebook Group, we are excited to announce the launch of XLH UK’s Connect forum.

To find out more about upcoming Connect meetings

What is Connect? 

Connect meetings are hosted on Zoom for 45 minutes each session. There will normally be at least one member of the XLH UK team to moderate and keep time plus some of our lovely volunteers to keep the discussion flowing. Connect offers a safe place to listen, with people who really understand. 

Who is Connect for? 

Anyone within our XLH community who wants to share their experience and advice with others. You might have XLH or care for someone who has it. Once established, we might offer sessions for different groups including for parents and older people. Session topics will vary and we will include some specific topics of interest, such as exercising with XLH or applying for benefits. 

What about confidentiality? 

To protect everyone, members will be asked to pre-register and will be assigned a unique sign-in which can’t be shared. Sessions won’t be recorded and numbers attending will be limited to a maximum of 15. 

Does it cost anything to join? 

No, Connect is absolutely free for those attending. 

How you can help 

Put your hand up if you’d like to volunteer to contribute to the Connect programme – we’d love to have you on board!  It just involves committing to attending and contributing to specific meetings, leaving the moderator free to focus on managing the technology and administration.

If you want to help out or suggest a topic for discussion, email us at contact@xlhuk.org 

Register your interest to join a Connect session