XLH UK is a small, volunteer run charity. We know people enjoy being involved with our friendly charity and meeting the community at our events. From helping at events, one-off projects to roles using professional skills, we welcome volunteers to assist us in the work we do.

With your support and involvement – we can make the XLH voice even louder!

Are you good at organising people and enjoy bringing people together to share their experiences? If so, we’d welcome your assistance with:

-face to face events 

-online meetings (Connect) 

fundraising activities 

-providing articles for our newsletter 

-contributing to research

Are you reliable and able to make a regular commitment of time to help us?

We’ve identified specific roles in the XLH Team, working alongside Trustees which will enable us to achieve our strategic goals.

Anyone with enthusiasm and commitment is welcome to volunteer! For more information on our events

Volunteering FAQs

Want to help us but not sure how? Please have a read through our FAQs below as a useful guide.

How much time do I need to give as a volunteer?

Whether you have a small amount of time or a longer-term window, please tell us and we’ll be happy to work with you. We also know (very well) that living with XLH changes from day to day, so we are always mindful of this.

What support will I get as a volunteer?

We’ll make sure you have what you need. You’ll also have a named contact at XLH UK, if you have any questions and receive one of our volunteer induction packs for guidance.

What if I want to stop volunteering?

If volunteering doesn’t suit you, please just let us know because we welcome feedback on how we can make our volunteering better. Ultimately, we want all our volunteers to have a worthwhile and positive experience.

Is XLH UK an officially recognised charity?

XLH UK is registered as a CIO (Charitable Incorporated Organisation) in England and Wales, registration number 1196811 to help those with XLH and related disorders across the UK. To find out more about the history of XLH UK and the team, please visit About Us.

Please get involved

If you’d like to use your skills to enable us to build our community by writing, co-ordinating, raising awareness, fundraising or anything else, please let us know by emailing contact@xlhuk.org