You have a name for it. Now what?
A diagnosis answers one question and opens about twenty more. Treatment, funding, specialists, school, work, and the ordinary business of living with something most people have never heard of. This is where our navigators do their work.
What we can help with
Access to treatment
Understanding what's available in South Africa, what isn't, and what routes exist when a treatment isn't registered locally. Some of this is slow and uncertain. We'll tell you honestly which is which.
Medical aid and PMB claims
Where most families get stuck. We can help you understand your rights, get the coding right, prepare a stronger motivation, and escalate when a scheme says no. ICD-10 coding alone decides a surprising number of outcomes.
The public sector route
If you don't have medical aid, the path looks different but it exists. We can help you work out which facility, which referral, and what to ask for.
Finding the right specialists
Rare conditions usually need more than one clinician, and getting them talking to each other is its own job. We can help with referrals and with joining the pieces up.
School, work and daily life
Accommodations at school, disability grants, employer conversations, and the practical things that make an ordinary week possible.
Finding people who get it
A support group for your condition, or a Patient Voices ambassador who has been where you are. For many families this turns out to matter as much as the clinical help.
What we are not able to do
We can't guarantee funding or reimbursement, and we don't replace your medical team. Nothing we share is medical advice and we'll never tell you to change a treatment. We work alongside your doctors, help you build the strongest possible case, and stay with you whether or not it succeeds.
One person, start to finish
A navigator gets to know your situation so you don't start from scratch every time you call.
Whatsapp Support line
Be counted
Every argument we make for better access rests on data, and South Africa has very little of it. When a medical scheme or the Department of Health asks how many patients a decision affects, the registry is where that answer comes from.
Joining takes a few minutes and makes the case for everyone with your condition, including the ones who haven't found us yet.
Its free, POPIA-compliant, and you control what's shared. It also means we can contact you about clinical trials, new treatments or research relevant to your condition.