Caring for someone is its own job.
Appointments, medications, medical aid battles, school meetings, and being the person who holds all of it in their head. Most caregivers are doing this alongside a job and the rest of a family. You're allowed to need support too.
What we can help with
Taking some of the load
A navigator can take on the chasing: the claim that hasn't been paid, the referral that hasn't come through, the specialist who isn't calling back. You don't have to be the only one pushing.
Getting into the room prepared
Help organising the medical history, the questions and the paperwork so that appointments and applications go better.
School and daily life
Accommodations, care plans, explaining a rare condition to a school that has never encountered it, and the disability grant process.
Other caregivers
Support groups and Patient Voices ambassadors, many of whom are parents and carers themselves. There's a particular relief in talking to someone who doesn't need the background explained.
Support for you, not just for them
Counselling is available to caregivers and siblings, not only to the patient. Caring for someone with a rare condition takes a toll, and that toll is worth taking seriously in its own right.
A word about the rest of the family
Siblings, partners and grandparents are part of this too, and often the least supported part. If someone else in your family is struggling with it, they can talk to us as well. They don't need to go through you.
You can call about yourself
Plenty of caregivers get in touch about their own situation rather than the person they care for. That's a legitimate reason to call.
Whatsapp Support line
Register the person you care for
The Rare Disease Patient Registry is how South Africa's rare community gets counted. Without it, decision-makers work from numbers that don't include your family.
You can register on behalf of someone you care for, including a child. It takes a few minutes and it strengthens the case for everyone.
Free, POPIA-compliant, and you control what's shared. It also means we can reach you about research or treatment developments relevant to their condition.