Walking the Line: Governance, Patient Voice, and Patient Safety

Written by Kelly du Plessis - CEO, Rare Diseases SA

At Rare Diseases South Africa, we are privileged to walk alongside thousands of patients and families every month. Through our support programmes, awareness initiatives, and community spaces, we meet people at very different points in their journeys.

Some are newly diagnosed and frightened.

Some have lived with their condition for decades.

Some are parents trying to understand what the future holds for their children.

Others are navigating complex treatment systems on their own.

Every one of them carries a story.

And those stories are the heart of patient advocacy.

They raise awareness.

They help shorten diagnostic journeys.

They influence research priorities.

They remind decision-makers that behind every policy discussion, there is a real person waiting for help.

But stories also carry responsibility.

As a patient organisation that runs multiple support groups across different conditions, we engage daily with a wide range of personalities, experiences, and perspectives. No two patient journeys are the same, and lived experience is one of the most valuable contributions any patient can make to the community.

At the same time, patient spaces must also be safe, accurate, and responsibly governed.

This creates a delicate balance.

The fine line between gaslighting and misrepresentation

Many people living with rare or chronic conditions have experienced medical gaslighting at some point in their lives. They have been dismissed, misdiagnosed, or told their symptoms were not real. As a result, patient communities are built on trust, empathy, and the willingness to listen.

No patient organisation wants to invalidate someone’s lived experience.

But there is another risk that is often overlooked.

When medical experiences are exaggerated, misunderstood, or inaccurately described, it can create fear, confusion, and mistrust within the community. Newly diagnosed patients may become frightened of routine treatments. Families may avoid care. Trust in healthcare professionals may be eroded.

This places patient organisations in a difficult position.

If you question a narrative, you may be accused of gaslighting.

If you accept every narrative without scrutiny, you may allow misinformation to spread.

Neither outcome is acceptable when the safety of the broader patient community is at stake.

Why governance matters in patient spaces

There is a common perception that governance is cold, bureaucratic, or disconnected from the realities of patient life. In truth, good governance is one of the most compassionate practices an organisation can adopt.

Governance ensures that:

• Concerns are addressed fairly

• No single voice carries unchecked authority

• Decisions are based on evidence, not popularity

• All parties are treated with dignity and respect

• The safety of the entire community remains the priority

Patient organisations cannot operate on hearsay, anonymous allegations, or group sentiment. While community feedback is important, decisions that affect individuals must be handled through fair, structured processes.

Putting this into practice at RDSA

As our organisation has grown, so too has our responsibility to ensure that our patient spaces remain safe, respectful, and ethically governed.

To support this, Rare Diseases South Africa has implemented a formal complaints channel. This process allows concerns to be raised in a structured and fair manner, ensuring that both the person raising the concern and the individual involved are treated with respect and procedural fairness.

The complaints process includes:

• A written submission with verified identity submitted to complaints@rarediseases.co.za

• Clear supporting information or evidence

• Administrative screening to ensure the concern falls within scope

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  Independent review where appropriate

• A written outcome based on evidence and governance principles

This approach ensures that:

• Concerns are taken seriously

• Anonymous or malicious claims do not cause harm

• All parties have the opportunity to respond

• Decisions are made fairly and independently

Our aim is not to silence patient voices. On the contrary, we believe that every patient deserves to be heard.

But we also believe that patient spaces must be safe, accurate, and responsibly managed for the benefit of the entire community.

Leading with compassion and accountability

Patient advocacy is often portrayed as inspiring and purpose-driven. And much of the time, it is.

But leadership in this space also means navigating uncomfortable situations, setting boundaries, and protecting due process even when emotions run high.

Good governance is not about choosing sides.

It is about protecting the integrity of the whole.

At Rare Diseases South Africa, we remain committed to:

• Amplifying patient voices

• Providing accurate and responsible information

• Creating safe and inclusive support spaces

• And ensuring fair, transparent governance processes

Because behind every story, every complaint, and every decision, there are real people whose lives are affected by the way we lead.

And that responsibility is one we take seriously.