CSF Leak Support Group

Stronger Together

A fortnightly online group for people living with a CSF leak

Tuesdays, 6:00pm–7:30pm

Starting 22 September 2026

Living with a CSF leak can feel frightening, overwhelming and, at times, very isolating. The physical symptoms are only part of the experience — the emotional toll can often go unseen or unsupported.

Stronger Together is a 12‑session online group designed to offer a safe, confidential and supportive space where you can connect with others who truly understand.

“Living with a CSF leak can feel incredibly isolating, but this group reminded me I’m not alone. The support and understanding from others has been invaluable.” Previous participant

Within the group, you’ll have the opportunity to:

- Share your experiences, thoughts and feelings

- Feel less alone in the challenges you’re facing

- Explore practical and emotional coping strategies

- Build supportive, trusting connections with others

Sessions are facilitated by Zubyda Azzam, a specialist counsellor from Rareminds with experience supporting people living with CSF leaks.

Whether you join from your bed or your sofa, you're welcome to take part in a way that feels comfortable for you.

About the facilitator

Zubyda Azzam (UKCP Accredited)
Zubyda is a registered psychotherapist with the UK Council for Psychotherapy. She has worked across a wide range of settings, including the NHS, prisons, refugee camps, and therapeutic communities.

With over 10 years’ experience as a Samaritans volunteer, she brings both depth and compassion to her work. Zubyda is particularly passionate about the power of group support within rare disease communities, including those affected by CSF leaks.

About the group

Maximum 15 participants on a first come, first served basis.

A commitment to attend all 12 sessions is encouraged to get the most from the programme

Open to anyone in the CSF leak community

Over the course of the programme, you'll explore shared experiences, build resilience, and gain tools to support your wellbeing alongside others who understand what you're going through.

More information here

Register your interest

If you would like to join Stronger Together support group, please complete the form below:

Register your interest here