Follicular Lymphoma Foundation

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Follicular Lymphoma Foundation

Transforming lives through innovative, patient-informed research to find a cure for follicular lymphoma and find it fast.

10/10/2026

Living with follicular lymphoma isn't only about scans, results and treatment. Some days simply feel heavier than others.

This , we want you to know:

🌿 It's okay to take a pause when you need one.

💭 You don't have to feel positive all the time.

🤝 Reaching out for support is a strength, never a burden.

Whether you're living with FL or supporting someone who is, how you're feeling matters. You're not on your own.

On the harder days, you might find comfort in our blog which includes practical tools from psychotherapist Surabhi Chaturvedi and Claire Hucker, a GP living with FL.

🔗 https://www.theflf.org/blog/coping-with-down-days/

💜 If you know someone who might need this today, we'd be grateful if you shared it with them.

World Health Organization (WHO)

07/10/2026

"I really want clinicians and researchers to understand what it's like to live with FL from the inside."

Paul was diagnosed with follicular lymphoma in 2017. After several years without treatment, he had chemo-immunotherapy in 2024 and was declared in remission in 2025. He's now on maintenance treatment and doing really well.

He has just completed the Global Follicular Lymphoma Patient Survey 2026, and he's encouraging others to take part too.

Having lived in the US, the UK and now Spain, Paul wants the best treatments to be available to everyone, wherever they live.

"For me, this survey really gives me hope that there will be new and more successful treatments, maybe even avoiding chemotherapy for my next treatment if I need one."

Whatever your experience of FL – newly diagnosed, on "watch and wait", in treatment, in remission or living with relapse – your voice deserves to be heard.

🌍 Open worldwide ⏱️ Takes around 10 minutes 🔒 Anonymous 💬 English, Spanish and Portuguese

Take the survey: https://survey.theflf.org/

Like Paul, what do you hope will come from the survey? Tell us in the comments below.

05/10/2026

We know it is not just patients who are affected by a diagnosis of follicular lymphoma, it's the people closest to them too!

Navigating this journey as a loved one can be challenging in many different ways and we want to make sure we are able to provide the information you need to support the person you love and help drive research for cure.

We'd love for you to join a small, friendly, informal discussion to help shape how we communicate about an exciting new programme of work to accelerate cure.

Tuesday 13th October at 3pm BST, 10am ET, 2pm UTC,

In return for your time we will offer you £50 or the equivalent in your currency.

Spaces are limited, register now to secure your place

Just 90 minutes A real say in something built for people like you

Sign up now: https://forms.cloud.microsoft/pages/responsepage.aspx?id=X_571rd8W025qZnrHxezV3Howko5zQNKmyJJkq5E5VtUOEtTWkNHUFJVMFg3TlJKM0JYS1FFWU80VC4u&or=PPT-WEB.BODY.NT&ct=1791215277379&route=shorturl

04/10/2026

Usually, doctors ask the questions about your follicular lymphoma. This time, we're asking you.

"Where do you want us to focus our efforts? What are your priorities?"

That's the question from our Chief Medical Officer, Dr Mitchell Smith, as he introduces the FLF 2026 Global Patient Survey.

Your answers don't just describe life with FL – they help direct where effort and attention go next, from research priorities to the issues we push hardest on.

As Mitchell explains, we take your views directly to physicians and researchers, to make sure your interests stay at the centre of their work.

Watch Mitchell's message, then tell us what matters most to you.

🔗 Take the survey: https://survey.theflf.org/s/flf-global-patient-survey-2026

💜 Please share this with anyone living with FL. The results will be published on our website.

30/09/2026

"Hope for a cure motivates me, as it does us all."

Beth was diagnosed with stage 4 follicular lymphoma in 2019, after a routine annual physical. Six months after starting treatment, she rang the bell. Today, she's enjoying time with her children, Brett and Molly, and her dad, Pat.

Thank you, Beth, and to everyone who has shared their experiences with us this Blood Cancer Awareness Month.

Your voices keep us going all year round, as we work with patients, researchers and partners towards cure for follicular lymphoma.

Read Beth's full story: https://www.theflf.org/your-support-hub/personal-stories/beths-story/

29/09/2026

We asked Professor Jessica Okosun, our scientific advisor based at the Barts Cancer Institute, how she helps people navigate a follicular lymphoma diagnosis.

She starts by explaining what FL actually is – a blood cancer that affects the immune system. Then staging, and why more scans might be needed. Then treatment options. And for some people, why treatment isn't needed straight away.

"This can sometimes feel counterintuitive – to be diagnosed with a cancer, but to not be offered any treatment."

It's a lot of information to take in at once, often in a single appointment, at a moment when very little else is going in.
Which is why it helps to have it somewhere you can come back to.

As Blood Cancer Awareness Month draws to a close, everything we've shared this September – on diagnosis, staging, "watch and wait" and what happens next – is in one place. Our newly diagnosed hub was shaped by people living with FL, who told us what they wish they'd had access to in those first few weeks.

Explore our newly diagnosed hub: https://www.theflf.org/your-support-hub/newly-diagnosed/

💜 If you know someone recently diagnosed with follicular lymphoma, please share this with them.

28/09/2026

Make your voice heard – the Global Follicular Lymphoma Patient Survey is now open.

Too often, research, education and support programmes move forward without fully understanding the lived experiences of people affected by follicular lymphoma. This survey helps change that.

By sharing your experiences, you'll help us better understand what it really means to live with FL today – and ensure that future research, patient information and programmes are shaped by what matters most to people living with follicular lymphoma.

This year’s survey includes a greater focus on shared decision-making, quality of life, treatment goals and the ongoing impact of living with FL.

🌍 Open worldwide
⏱️ Takes around 10 minutes
🔒 Anonymous, unless you choose to share your email
💬 Available in English, Spanish and Portuguese
📅 Closes Monday 19 October 2026

Take the survey: https://survey.theflf.org

Please share this post so more people living with FL can add their voice.

25/09/2026

Our Annual Global Patient Survey is coming soon. Every year, people living with follicular lymphoma tell us what matters most to them. Those insights help shape what we do next – from the research we support to the information and resources we create for the FL community.

In our last survey:
📊 53% said diagnosis was the hardest part of their FL journey
📊 46% identified emotional and mental wellbeing as their biggest challenge
📊 29% weren't sure a clinical trial would work as well as standard treatment

Your feedback helped us develop new resources for people who are newly diagnosed, create a dedicated webinar focused on coping with the emotional impact of FL, and launch our clinical trial myth busting series.

Every response helps us better understand what life with FL is really like and where we can have the greatest impact.

The next Annual Global Patient Survey is coming soon. Your voice matters.

Read more about what we learned from our 2025 survey: https://www.theflf.org/news/scientific-insights/the-flf-2025-global-patient-survey-what-did-we-learn/

21/09/2026

Why would your doctor recommend "watch and wait"?

It can be difficult to hear that you have follicular lymphoma but won't be starting treatment. Understanding why "watch and wait" (also called active monitoring) is recommended can help make the approach feel a little less uncertain.
Because follicular lymphoma is slow‑growing, treatment isn't always needed straight away. Clinical studies have shown that starting treatment earlier does not improve overall life expectancy.

Watch and Wait isn't doing nothing. It's a carefully planned approach where your healthcare team monitors you closely and starts treatment when the time is right.

Watch and Wait can also mean:

✅ Less exposure to treatment and potential long‑term side effects

✅ More time to understand your options and plan ahead

✅ More time for new treatment options to become available

Learn more about "watch and wait" in our newly diagnosed hub: https://www.theflf.org/your-support-hub/newly-diagnosed/

18/09/2026

People living with follicular lymphoma have waited long enough.

Despite remarkable progress, follicular lymphoma remains incurable. Patients and families still live with the uncertainty of relapse, never knowing if or when the disease might return.

Thanks to supporters like you, FLF is bringing together leading researchers, clinicians, pharmaceutical partners and patients around a single goal: accelerating progress towards cure.

But we are not there yet.

Some of the most promising opportunities we've ever seen to prevent relapse and move closer to cure are happening right now. We cannot afford to slow down.

This Blood Cancer Awareness Month, will you help accelerate the next breakthrough?

💜 Donate today and help move the most promising research towards patients faster: https://www.theflf.org/donate/

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