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 Community Days and our Facebook Group, we have created two peer to peer support opportunities:
– XLH UK Connect Forum: Regular online meetings that cater to those who feel most comfortable chatting in a group.
– XLH Buddy Scheme: A peer-to-peer scheme that would suit those who prefer a one-to-one chat.
XLH Connect
Our online Connect forum offers the opportunity to discuss all things XLH in a group. Connect meetings are hosted monthly 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 and non-judgmental online place to talk and listen with people who really understand.
To find out more about upcoming Connect sessions click here.
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
To register or find out more about upcoming Connect Events
XLH Buddy Scheme
We appreciate that not everyone feels comfortable speaking in a group. That’s why we’re launching the XLH Buddy Scheme, offering more personal, one-to-one peer support. The Buddy Scheme is for any adults who would prefer a private, more personal conversation with someone who understands life with XLH. The aim of the scheme is particularly to provide peer support for adults starting on burosumab. Our buddies have direct experience with this and are there to support you.
Who are the buddies?
Our buddies are volunteers who live with XLH and are currently on burosumab – therefore bring both empathy and firsthand experience to their conversations.
How do I get in touch with a Buddy?
If you’d like to speak to a buddy, simply email us at contact@xlhuk.org with the subject line: ‘Buddy Scheme’. We’ll connect you with one of our volunteers for a confidential, friendly chat.
Does it cost anything?
No, our Buddy Scheme is absolutely free.
How you can help
If you’d like to volunteer to be a buddy – we’d love to hear from you! Please email us at contact@xlhuk.org to discuss how you can get involved.