From Listening to Building: Scouting New Patient Voices in South Africa

Maranda van Dam is Founder of ASASA (Axial Spondyloarthritis Association of South Africa) and a former ASIF Trustee

A room in Groote Schuur Hospital in Cape Town, South Africa on a Friday afternoon. Twenty-four patients, five caregivers, nine rheumatic and related conditions. This was ASASA’s second Hand in Hand patient support meeting, and it was the most revealing one I have been part of.

We came to listen. Specifically, to test appetite for new patient organisations across the diseases that currently have no formal voice in South Africa. Ankylosing spondylitis, gout, rheumatoid arthritis, lupus, osteoarthritis, psoriatic arthritis, fibromyalgia, systemic sclerosis. Nine disease areas. One country. And only a handful of established patient organisations between them.

The gap is real. RA patients in the room confirmed that the only support currently available to them is informal Facebook groups. One patient, who attended ASASA’s first Hand in Hand meeting two years ago, has been trying to mobilise his own disease community ever since. He asked openly for ASASA’s help to take the next step. That request alone was worth the afternoon.

We heard stories that will stay with me. A woman living with RA, osteoarthritis, fibromyalgia and systemic sclerosis explained that she has had to start her own home-based business because the disease burden makes full-time work impossible. Another patient with polyarthritis has lost both legs and now uses a wheelchair. Several spoke about the loneliness of the diagnostic odyssey and the relief of finally having a name for what they were living with. “Knowing I am not alone” came up again and again.

When we asked what would stop them from starting a patient organisation themselves, the answers were honest. Fear of failure. Uncertainty about managing different personalities. Concern about lacking empathy for the role. Lack of practical skills. Not knowing what it actually takes to run a patient organisation.

These are not reasons to hold back. These are the curriculum.

Two concrete outcomes came out of the afternoon. ASASA has committed to mentor a new gout patient organisation, with a starter plan covering name, logo, social media, a basic website, and outreach to rheumatologists so referrals can start. We will also open the conversation with EULAR PARE for resources and guidance. Separately, three RA patients stepped forward to say they would be interested in starting their own peer support structure. We will follow up with them directly.

Looking forward, we are proposing a two-day format for 2027. Day one keeps the listening format from this year, designed to scout new disease groups and recruit potential leaders. Day two delivers an intensive training programme for new patient organisations, covering the exact skills patients told us they were missing. Governance basics. Managing personalities. Peer support skills. Fundraising fundamentals. Communications. Engaging rheumatologists. Scout one day, train the next.

This is the model ASIF has taught us globally. Patient organisations do not build themselves. They are built by people who are supported, trained, and mentored by those who have walked the road before them. ASASA exists because of that chain. Our job now is to extend it.

The room on 17 April was honest, generous, and ready for the next step. The work now is to keep the momentum, support the gout group properly through its first months, and build the 2027 programme around what patients have actually asked for.group properly through its first months, and build the 2027 programme around what patients have actually asked for.

Hands on Rheumatology Primary Healthcare Update

ASASA Takes Patient Voice into GP Training, and the World AS Day Video Makes Its Debut

The next morning, Saturday 18 April 2026, Groote Schuur Hospital hosted the Hands on Rheumatology Primary Healthcare Update in Lecture Theatre 2. A full day of practical rheumatology training for general practitioners, covering everything from inflammatory arthritis and SLE to frozen shoulder and intra-articular injection technique.

ASASA was given two speaking slots on the programme. I presented first on The Importance of Patient Support Groups, setting out why patient organisations are a critical part of the care pathway and not an optional add-on. Later in the programme I returned with the ASASA-specific slot, Axial SpA Support: AXSPASA, introducing the organisation, what we offer, and how GPs can refer their patients to us.

During the AXSPASA slot we premiered the new ASASA World AS Day video for the first time. The feedback in the room was deeply emotional. GPs came up afterwards to say the video had done something their textbooks and lectures had not. It helped them understand, in the patients’ own words, what the delay in diagnosis actually costs. The years of being passed between specialists. The misdiagnoses. The impact on work, on families, on mental health. Several spoke about how it would change the way they approach young patients with chronic back pain in their consulting rooms.

This is exactly why the video exists. We made it for patients, but we also made it for the clinicians who see our patients first and who hold the key to shortening the diagnostic journey.

Find out more about ASASA

Watch the World AS Day videos

From Listening to Building: Scouting New Patient Voices in South Africa

Hands on Rheumatology Primary Healthcare Update

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