Sarcoma UK was founded by Roger Wilson CBE, a sarcoma patient. We understand the importance of representing people affected by sarcoma in all areas of our work.
Our mission is to ensure everyone affected by sarcoma receives the best possible treatment, care, information and support available.
We want to empower people affected by sarcoma to contribute to decisions about the work we do, the research we fund, and the services we provide. We want you to help shape the future of Sarcoma UK.
What is the Involvement Network?
The Involvement Network is a group of over 150 people who have been affected by sarcoma. Members help to shape our work by sharing their experiences and opinions. Their insights are essential to our work for us to be to able best be there for people affected by sarcoma.
For example, we fund world-class research to understand sarcoma better, improve treatments and ultimately make a difference to people with sarcoma. All our research grants are reviewed by people affected by sarcoma. Their personal experience of sarcoma gives them a unique insight, to make sure the research we fund is based on the things people affected by sarcoma are telling us.
Who can join?
You can join if you:
- Have had sarcoma yourself
- Have cared for someone with sarcoma
- Are related to or know someone with sarcoma
- Or a healthcare professional working with sarcoma patients.
What will I do as a member?
As a member of our Involvement Network, you could get involved in many ways.
You choose what you want to do, and you can do as much or as little as you like. There’s no pressure to take part in anything and we don’t expect you to work with us for a certain amount of time. Most of our opportunities are online and we make sure in-person opportunities are near you or where you’d be happy to travel to across the UK.
Based on what you’re interested in getting involved in, you’ll be sent different opportunities. We’ll also keep you up to date with opportunities in our newsletter, which we aim to send out once a month.
Here are some examples of what you could do:
- Share your story to raise awareness
- Help us decide what research we should focus on
- Review our booklets and website information before we publish them
- Tell us what issues matter most to sarcoma patients and their families
- Join in with our fundraising events.
How do I join the Involvement Network?
To join our Involvement Network, fill out the form at the end of the page with your information. Our Patient Involvement Coordinator will contact you (usually within 5 working days). They’ll give you more information and find out about more about you over email, phone or video call. Once signed up, we’ll send you information about new opportunities.
Join Sarcoma UK’s Involvement Network
Before you fill out this form, please note:
- Fields marked with an asterisk (*) are required. All other fields are optional.
- We will contact you on the email address you provide and this will only be used to contact you about involvement opportunities
- We will only store your information in our database with your consent after we’ve made contact with you.
Join our Involvement Network
Your data will be handled in accordance with our privacy policy.
If you have any questions or if anything is stopping to you joining, please email us at patient.involvement@sarcoma.org.uk
You can also find out about our local support groups to be involved with them.
If you’d like to be put in contact over the phone, you can call us on 020 7856 0445
Sarcoma UK’s office is open Monday-Friday, 9am – 5 pm.
Sarcoma is often described as the loneliest cancer, so being part of the network and sharing your experiences hopefully makes people feel less lonely.
