Lymphoma Action

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Lymphoma Action We are the UK’s leading charity dedicated to supporting people affected by lymphoma, the most common blood cancer. 💜 Facebook).

We are the UK’s leading charity dedicated to supporting people affected by lymphoma, the most common blood cancer. Our social media community guidelines:
These guidelines cover all our social media channels and accompanying groups. Please note, unless messages are posted by Lymphoma Action they are the opinion of the contributor, not of the charity itself. The aim of our social media channels and groups is to provide a safe and friendly environment where users can share information and offer mutual support. Social media plays an important role in achieving our mission that no one has to face lymphoma alone.

1) Being respectful
Please be aware that because of the nature of lymphoma, we’re asking you to be mindful and respectful of any content which may cause upset or offence. Social media can be challenging – it’s possible to misinterpret someone’s post and it’s possible that other people may disagree with something you’ve written. We want to keep our community warm and friendly and so we’re asking you to ‘think before you post’. Please avoid posting or sharing content that is discriminatory on the basis of identity including s*x, gender identity/reassignment, s*xual orientation, marital or family status, disability, race including colour, nationality, ethnic or national origin, and religious or philosophical beliefs. Please don’t post or share anything that’s threatening or abusive towards others, obscene or offensive.

2) Keeping safe
From time to time, we may ask our community to share their general tips and advice relating to their experiences of lymphoma. Users may also choose to volunteer this information in comments on other posts. This information should not be considered as medical advice and should never be considered a substitute for advice that can only be provided by a healthcare professional. We ask you not to post content that attempts to advise on an individual’s diagnosis, treatment or prognosis. Please do not promote the use of alternative treatments. Lymphoma Action cannot guarantee that you will be protected from malicious internet activity and recommends that you install internet protection software. Please do not post your contact details on our pages. Lymphoma Action cannot take responsibility for any private messages that occur between users.

3) Keeping within the law
You may want to post in support of a loved one or share your experiences that have come about through someone you know being diagnosed with lymphoma. We want to provide a safe space for everybody affected by lymphoma and this includes family, friends and colleagues of people diagnosed. If you are naming someone in your post and referencing their diagnosis, or you are using an image that includes someone other than yourself, you need their explicit consent to do this before you post. Only post content that you own or that has been shared with you by the owner for the purpose of posting onto social media. This may include content such as poems, lyrics, photography and infographics. It is important to consider this when posting so that you do not infringe on copyright and/or trademarks. As detailed in our privacy policy, Lymphoma Action does not share your information with other charities, nor do we sell your data. Where we use third parties to process your information we ensure they have robust security and clearly defined data protection obligations as the data processor under their contract with us.

4) How you can help
Please keep to our community guidelines. If you see a post or comment that you feel goes against our guidelines, please don’t respond and instead make us aware of this. You can email [email protected] or send us a direct message on the relevant social channel. Unfortunately, spam posts and comments have become increasingly common on social media. These often claim to promote forms of treatment that are available by clicking a link. Please do not click these links – instead report these posts (either click and hold or tap the three dots next to the post to see the option for reporting).

5) Actions we take
Our social media channels, pages and groups are monitored by charity staff and volunteers. Lymphoma Action actively monitors social media channels and inboxes Monday-Friday between the hours of 09:00 -17:00, but not at the weekends or public holidays. We do not approve every comment before they are posted as we want our social channels to remain a vibrant and collaborative space. This is why we need users to post within our guidelines and to support us by notifying us of any issues. To protect our community, we do not allow user generated posts or comments that promote or advertise, this may include (although not limited to), treatments and health services as well as requests for participants in clinical trials or media content. Any content that we view to be unacceptable will be removed and where appropriate reported to the social media channel owner (e.g. This will include all posts that are ‘spam’ in nature regardless of content. Anyone who persistently breaks our community guidelines may be permanently blocked/banned from accessing the channel/group. Messages that are critical of individuals or health professionals, specific treatments, services or treatment units will be removed. This is to ensure that others are not discouraged from getting the help they need. We will not tolerate any discriminatory, abusive, suggestive, offensive, oppressive, intimidating or threatening language or any inappropriate or graphic images. Anyone who posts content of this nature will be blocked/banned from accessing the channel/group.

6) Our groups:
We have a number of Facebook groups, each with a specific purpose. This, for example, includes our closed Facebook Support Group (Lymphoma Action Support UK) intended for anyone over 18 years of age, affected by lymphoma across the UK. From time to time, we may also create new groups, for example, groups specific to a fundraising activity such as the TCS London Marathon. You can find information about the purpose of each group and any associated rules for membership and posting within the ‘About this group’ section on Facebook. And finally…
Lymphoma Action reserves the right to withdraw any channel/group if it is found to not be serving the purpose for which it was set up. Lymphoma Action reserves the right to make changes to our community guidelines when necessary and without notice, but we will do our best to ensure that any significant changes are made clear to all users. We welcome any feedback that you may have about our social media – please email [email protected].

The latest issue of Lymphoma Matters has landed!Inside you can find lots of lymphoma stories, and the latest updates. Re...
01/11/2026

The latest issue of Lymphoma Matters has landed!

Inside you can find lots of lymphoma stories, and the latest updates. Read about health-related laws and rules, new treatments, oral health and cancer, what treatment might look like in the next 40 years, and much more!

Read online now 👉 https://www.lymphoma-matters.org.uk/136/

The Faithful are looking for Traitors. We're asking you to look out for lymphoma symptoms.Lymphoma is the most common bl...
30/10/2026

The Faithful are looking for Traitors. We're asking you to look out for lymphoma symptoms.

Lymphoma is the most common blood cancer - it affects people of all ages.

Having one or more of these symptoms doesn't necessarily mean you have lymphoma. However, if something doesn’t feel right or symptoms persist, it’s always worth speaking to your GP.

Please share this post to help raise awareness.

Miles, smiles and plenty of purple! 💜This month, many of you have been walking, running and taking on incredible challen...
29/10/2026

Miles, smiles and plenty of purple! 💜

This month, many of you have been walking, running and taking on incredible challenges (with some tasty looking bakes too!). We're so grateful to everyone who joined . Together, we can make sure no one faces lymphoma alone.

28/10/2026

Thinking about travelling after lymphoma treatment?

Going on holiday after cancer can bring extra considerations. Josh shares three practical tips to help you feel more prepared and confident before you set off.

Our new Symptom tracker is here!Whether you're worried you may have lymphoma, or you have a diagnosis and are living wit...
27/10/2026

Our new Symptom tracker is here!

Whether you're worried you may have lymphoma, or you have a diagnosis and are living with lymphoma, including navigating treatment - this tool is for you!

Our new Symptom tracker can help you keep note of any changes you're experiencing and conversations with your healthcare team.

It's a practical tool to help you record symptoms, spot patterns and feel more prepared for appointments.

Download a copy or order one free by post 👉 https://lymphoma-action.org.uk/information-and-support/support-you/books-and-information/self-management-tools

Despite a joint appeal from Lymphoma Action, Anthony Nolan and Blood Cancer UK, and a further appeal from manufacturer G...
23/10/2026

Despite a joint appeal from Lymphoma Action, Anthony Nolan and Blood Cancer UK, and a further appeal from manufacturer Gilead, NICE has not recommended the use of Tecartus for treating relapsed or refractory mantle cell lymphoma after two or more lines of systemic treatment in England and Wales.

Brexu-cel, also known by the brand name Tecartus, is a CAR-T cell therapy - a type of treatment that uses a person’s own immune cells to fight lymphoma. It has been available through the Cancer Drugs Fund for people with relapsed or refractory mantle cell lymphoma, meaning lymphoma that has returned or has not responded to treatment.

While NICE (National Institute for Health and Care Excellence) acknowledged that the treatment is clinically effective, it concluded that there was too much uncertainty about the extent of its benefit to recommend it as a cost-effective use of NHS resources.

We are deeply disappointed by this decision, which highlights wider challenges in accessing CAR-T cell and other advanced cell and gene therapies. Unlike many existing options, these treatments can offer the potential for long-term disease control after a single treatment. However, gathering enough evidence to meet NICE’s treatment assessment requirements can be difficult for rare cancers such as mantle cell lymphoma, which affects around 600 people in the UK each year.

We know just how strongly our community felt about this particular appraisal and our immediate priority is to support anyone affected by the decision. We encourage anyone who would like to talk, or who needs information and support, to contact our Helpline Services, available from 10am to 3pm, Monday to Friday. You can contact us by calling freephone 0808 808 5555, emailing [email protected], or using the purple Live Chat box in the bottom right-hand corner of our website.

Several new treatments are expected to be assessed by NICE over the next year, and we hope some may help to address the gap left by this decision. We will make sure our community is kept up to date with these developments as and when they happen.

Read more 👉 https://lymphoma-action.org.uk/news/nice-decision-regarding-tecartus-mantle-cell-lymphoma

“The patient voice matters because we bring insights that can only be fully understood by someone with lived experience....
22/10/2026

“The patient voice matters because we bring insights that can only be fully understood by someone with lived experience.

I greatly enjoy my volunteer role as chair of the Patient and Public Involvement and Engagement Forum. The role of the forum is to make sure that the patient voice shapes the work of the National Non-Hodgkin Lymphoma Audit [NNHLA].

We use data to assess the effectiveness of treatment for adults with non-Hodgkin lymphoma in England and Wales, and we make recommendations to NHS leaders and hospital clinical teams.

The audit is the only source of information about performance across the system of care overall and in each hospital. Armed with our data, patients will be better informed about what to expect and any risks of delay that they might experience.

I was treated for a slow growing type of NHL in 2018. I retired from my career as an interim consultant on the day I got the news. In time, I came to realise that I needed to volunteer in some capacity. I became involved with Lymphoma Action in 2022. We discussed the prospect of developing a national audit for lymphoma and when the NNHLA opportunity became available, I jumped at the chance.

Lymphoma Action has always been incredibly encouraging and supportive of my role. The team promote our work, have recruited further volunteers, and acted as a sounding board on how we might improve the audit.

The challenge over the coming year is to go further and identify practical solutions to the big issues for patients. For example, although we have made strides in understanding the progress of patients along the pathway it is not yet clear what the reasons are for such wide variation in the time it takes across different hospitals.

I am a firm believer in the principle of openness and transparency for the NHS, and to have patients and the public well informed about the performance of the system can only be a good thing. Lymphoma Action has supported me by encouraging my work, making me feel valued and giving practical advice and insights on how best to develop the audit. To have the opportunity to help shape this work is wonderful.” Frank

Learn more about the NNHLA 👉 https://lymphoma-action.org.uk/campaigning/our-advocacy-work/national-non-hodgkin-lymphoma-audit

21/10/2026

Ever wondered what people mean when they talk about lymphocytes, Hodgkin and non-Hodgkin lymphoma, or grades?

In this quick explainer, we break down three common lymphoma terms in just 60 seconds, helping to make lymphoma language a little easier to understand.

Watch now and build your lymphoma knowledge, one word at a time.

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