Let's work out what you need.

Whether you have a diagnosis, are still waiting for one, or you're caring for someone who is, start here. There's no wrong question and no wrong door.

Where are you right now in your journey?

I'm looking for a diagnosis

Years of tests and no answers is exhausting, and more common that you'd think. We can help you understand what to ask for and where to go next.

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I have a diagnosis

Access to treatment, medical aid claims, finding the right specialist, and the practical day to day. This is where our navigators do their work.

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I'm caring for someone

Caring for someone with a rare condition is its own job. Support, information, and a community that understands what your days actually look like.

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What we can do for you

Talk to a navigator

One person who knows the system, helps you work out your next steps, and stays with you. This is our core service and it's free.

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Join the patient registry

South Africa has very little rare disease data, which makes it easy for decision-makers to overlook this community. The registry is how we prove the need. You don't need a confirmed diagnosis to join.

Help us count you

Find your community

Support groups and Patient Voices ambassadors across specific conditions. People who have walked the same road and can tell you what's ahead.

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Counselling and genetic counselling

Professional support, because a rare diagnosis affects more than the person who has it.

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Patient ID cards

So that in an emergency, whoever is treating you knows what they are dealing with.

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Resource hub

Guides, forms and explainers, including the things nobody tells you, like why ICD codes decide whether your claim gets paid.

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What we cannot do for you

We would rather be honest up front than have you hope for something we cannot deliver.

We cannot diagnose you

We are not clinicians. What we can do is help you understand the process, prepare for appointments, and find the right specialist to take you further.

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We can't guarantee funding

We can help you understand your rights, prepare a stronger application, and escalate where there is a case to make. Sometimes those applications succeed. Sometimes they don't.

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We don't replace your medical team

Nothing we share is medical advice, and we will never tell you to change a treatment. We work alongside your doctors, not instead of them.

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What we can promise: we will tell you the truth, we will stay with you through it, and we won't disappear when it gets complicated.

You don't need anything to contact us

Our support is free. You don't need a confirmed diagnosis, a medical aid, or a referral. If we can't help with something ourselves, we'll tell you honestly and point you to who can.

Talk to a navigator