Be the Voice that Shapes our Future
Sarcoma UK’s mission is driven by the real-life experiences of those impacted by sarcoma, including our founder, Roger Wilson CBE, a sarcoma patient himself. By joining our Involvement Network, patients, carers, family and friends become an essential part of the community. Your unique insights and experiences are a powerful resource that will help the charity fund life-saving research, improve support services, and influence policy.
The Power of Your Experience
Your story, your impact. Every day, our involvement network members use their personal experiences to make a real difference. You don’t need any prior experience to help—just a desire to get involved. Here’s how our Involvement Network shapes our work:
Influencing Research
Reviewing grant applications to ensure research is relevant and meaningful to the sarcoma community.
Guiding Support
Providing feedback on our support line, publications, and online resources.
Driving Policy
Share your views with policymakers so they hear the sarcoma community’s needs.
Shaping Campaigns
Helping us create powerful and authentic communications that resonate with patients and the public.
“It has enabled me to meet fellow patients, to share our experiences and to provide mutual support and advice. It is a ‘club’ nobody wants to join but once you are a member you feel a strong bond with fellow patients. It has also given me the opportunity to make something positive of my experience as a sarcoma patient and to contribute to the work of Sarcoma UK.”
John, Patient
“I want to raise awareness of potential red flags for Sarcomas. I want to do this in memory of my late husband Robert who died aged 53 in August 2024 just 10 weeks after diagnosis of an Intimal pulmonary artery sarcoma.”
Christine, Family Member
“Being part of the network has allowed me to stay engaged and contribute to patient advocacy in unexpected ways. It’s opened up new avenues to get patient voices heard and involved in different parts of the funding, research and care for families affected by sarcoma.”
David, Patient
“Sometimes it’s nice to see positive stories on social media as I saw lots of negative ones. However, I was diagnosed with a rhabdomyosarcoma age 21, had 3 spinal surgeries, chemotherapy, proton beam therapy and maintenance chemotherapy and I am now 2 years in remission. I share my story online to spread my positive story!”
Claudia, Patient
How to Join
It’s simple and only takes a few minutes. Just click the button below to fill out our form. Once we receive your details, we’ll send you a welcome pack and keep you updated on the latest opportunities.
Frequently Asked Questions
Who can join the Involvement Network?
Anyone who has been affected by sarcoma can join. This includes patients, carers, family members, and friends.
Do I need any special skills or experience?
No, you don’t need any prior experience. Your unique personal insights are what matter most. We will provide any training or support you need for a specific role.
How much time do I have to commit?
You can commit as much or as little time as you like. We have opportunities that range from quick surveys to long-term advisory roles, you can find something that fits your schedule.
Can I choose which opportunities I get involved in?
Absolutely! We’ll send you a variety of opportunities, and you can decide which ones you’d like to participate in. There is no obligation to take part in anything you don’t want to.
What if my circumstances change and I can no longer be involved?
We understand that life can be unpredictable. You can leave the network at any time, for any reason, without a problem. Just let us know by emailing involvement.network@sarcoma.org.uk, and we will update our records.
How do you ensure diverse voices are heard?
We actively work to make sure our network represents the full diversity of the sarcoma community. Therefore, we commit to making opportunities accessible to everyone, regardless of their background, location, or personal circumstances.
Will I be paid for my involvement?
The Involvement Network is a voluntary program, so we won’t pay you for your time. However, we commit to ensuring that participation isn’t a financial burden. We are exploring options to cover reasonable expenses to ensure everyone can get involved.
What kind of support can I expect from Sarcoma UK?
We will provide you with all the information and training you need to feel confident in your role. In addition, you will have a dedicated contact person at Sarcoma UK to answer your questions and provide support.
You can also find out about our local support groups and get involved with them.
How will my personal information be used?
Your privacy is important to us. We will use your information to match you with relevant opportunities and to communicate with you about the network. We will never share your details without your explicit consent. You can learn more in our privacy policy.
For instance, if you’d like to be in contact over the phone, you can call us at 020 7856 0445
Our office is open Monday through Friday, from 9 am to 5 pm.
