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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 35

Meet Our Regional Volunteers

At Childhood Tumour Trust, we know how important it is for families affected by Neurofibromatosis Type 1 (NF1) to feel connected, supported and understood. While our community spans the whole of the UK, we also recognise that local support can make a real difference.

That is why we are developing our network of Regional Volunteers.

Our Regional Volunteers are members of the NF1 community who are passionate about helping others. They act as local points of contact, helping families connect with one another, sharing information about Childhood Tumour Trust activities, and supporting local meet-ups and events where possible.

Using the map below, you can see the areas currently covered by our Regional Volunteers. As the programme grows, we hope to expand our coverage so that more families can access support closer to home.

Regional Volunteers can:

  • Help welcome new families into the NF1 community
  • Signpost families to Childhood Tumour Trust services and resources
  • Support local gatherings and community events
  • Help raise awareness of NF1 in their area
  • Provide a friendly local connection to our wider charity network

While our volunteers are not healthcare professionals and cannot provide medical advice, they understand many of the challenges of living with NF1 and can help families feel less alone.

If there is a Regional Volunteer in your area and you would like to make contact, or if you are interested in becoming a Regional Volunteer yourself, we would love to hear from you.

Together, we are building a stronger, more connected NF1 community across the UK — ensuring that no child, young person or family has to face NF1 alone.

Interested in getting involved?

Contact us at Childhood Tumour Trust to find out more about becoming a Regional Volunteer or connecting with your local representative.