Lymphoma Action

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].

Today, NICE has announced that it will reconsider its decision to recommend the removal of Tecartus for the treatment of...
09/06/2026

Today, NICE has announced that it will reconsider its decision to recommend the removal of Tecartus for the treatment of relapsed or refractory mantle cell lymphoma.

Lymphoma Action, together with Anthony Nolan and Blood Cancer UK, submitted a formal appeal against the decision not to recommend the use of Tecartus (brexucabtagene autoleucel) for treating relapsed or refractory mantle cell lymphoma after two or more lines of systemic treatment. Gilead Sciences Limited, the pharmaceutical company who manufacture Tecartus, also submitted an appeal.

We welcome this positive step and hope the Committee will revisit their original decision, allowing this treatment option to remain available for those that need it most.

We will continue to work alongside other charities and will post updates as they become available. For more details, read our blog: https://lymphoma-action.org.uk/news/nice-decision-regarding-brexucabtagene-autoleucel-mantle-cell-lymphoma

Want to speak with someone or need a listening ear? Call our Helpline (0808 808 5555, weekdays 10am-3pm).


National Institute for Health and Care Excellence

Thank you All on the Board for sharing this important message. A lymphoma diagnosis doesn't just affect the person who h...
08/06/2026

Thank you All on the Board for sharing this important message. A lymphoma diagnosis doesn't just affect the person who has been diagnosed. This Carers Week we want to highlight our support for family, friends and carers. 💜

If you want a go-to book on all things lymphoma, want to speak with someone or need a listening ear click here 👉 https://lymphoma-action.org.uk/carers-week

“I had heard of Hodgkin lymphoma but had no idea what I was facing. The main thing I wanted to know was whether it was t...
07/06/2026

“I had heard of Hodgkin lymphoma but had no idea what I was facing. The main thing I wanted to know was whether it was treatable.

We have been fortunate that no-one in our family has had a blood cancer before, so my family were really upset, confused and very worried. But they were also fantastic and amazingly supportive too. We decided not to tell our daughter about it until I was about to start treatment. We told her school, who were fantastic and a great support to her.

When treatment had finished the scan showed the treatment had been successful. This was wonderful news, but the fear of relapse was really high at the time, and continues to be in my mind even now, as I approach the 1 year anniversary of treatment finishing.

We have undertaken a number of trips as a family to Cornwall now, including for my Dad’s wedding which was amazing to be part of, and starting to plan going further afield as the anxiety reduces.” Craig

Diagnosed with classical Hodgkin lymphoma, Craig talks about his treatment and life after treatment 👉 https://lymphoma-action.org.uk/stories/craig-0

To our incredible volunteers - thank you! 💜From offering support and raising awareness, to sharing skills and shaping ou...
05/06/2026

To our incredible volunteers - thank you! 💜

From offering support and raising awareness, to sharing skills and shaping our work behind the scenes, the impact our volunteers make is truly inspiring and helps make sure that no one faces lymphoma alone.

Lymphoma Action wouldn’t be what it is today without our volunteers, past and present.

This Pride Month, we want every person affected by lymphoma to know that they deserve to feel seen, heard and supported,...
02/06/2026

This Pride Month, we want every person affected by lymphoma to know that they deserve to feel seen, heard and supported, exactly as they are. 🌈

"It's so hard going through a cancer journey for everybody. It shouldn't be made harder for LGBTQIA+ people."

In our podcast episode, 'Finding a safe space', we discuss some of the additional challenges LGBTQIA+ people can face during diagnosis and treatment, and why inclusive care and community matter.

🎧 Listen now 👉 https://lymphoma-action.org.uk/information-and-support/support-you/lymphoma-voices-podcasts

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Celebrating 40 years of volunteers!From being founded by volunteers in 1986 to supporting people affected by lymphoma to...
01/06/2026

Celebrating 40 years of volunteers!

From being founded by volunteers in 1986 to supporting people affected by lymphoma today, volunteers have always been at the heart of everything we do. Their compassion and dedication continue to shape every step of our journey.

As we celebrate 40 years of Lymphoma Action, we’re proud to look back on how volunteering has evolved and are grateful to everyone who has helped us come this far. 💜

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