A private community by, and for, people living with thalassaemia and sickle cell across Aotearoa.
Your specialist understands the medicine. Your whānau loves you. But there's a particular kind of understanding that only comes from people who've lived it themselves.
Our peer support community is where you can talk about the things that don't fit anywhere else, the boring frustrations, the late-night fears, the small wins, the weird tips no doctor would tell you.
Choose the format that fits your life, many people use all three.
Our closed Facebook group, a safe space to ask anything, vent, share resources, and celebrate small wins. Active 24/7 with members across NZ and globally.
Best for: daily connection, asking quick questions, finding people in similar situations.
Matched with someone who lives with the same condition, and ideally at a similar life stage. Regular check-ins by phone, video, or in-person. Confidential, no pressure.
Best for: newly diagnosed whānau, anyone navigating a transition (school, work, pregnancy, life change).
In-person gatherings in Auckland, Wellington, and Christchurch (with online for everyone else). Coffee, kai, conversation. No agenda, just connection.
Best for: meeting your community face-to-face, bringing whānau or partners along.
Thalassaemia (any type) or sickle cell disease.
Of children with thalassaemia or sickle cell, newborns through young adults.
Of someone living with the condition, navigating the relationship and family planning.
Especially those who've just discovered their status and want to learn from the community.
Brothers, sisters, grandparents, aunties, anyone walking this with someone they love.
From Kaitāia to Bluff, most of the community is online, so location doesn't matter.
What's shared here stays here. Members agree to confidentiality, we vet new joins carefully.
"Have you tried…?" is the opposite of helpful when someone's venting. We listen first, advise only when asked.
Any ethnicity, faith, gender, sexuality, this is a space for everyone. Racism, transphobia, and homophobia have no place here.
We share experiences, not diagnoses. Your specialist is your specialist, we're your community.
You don't have to be "strong" or "inspiring" here. You're allowed to be tired, cranky, scared, or fed-up.
Small wins count. Celebrate each other. The community runs on mutual generosity.
"I'd been managing on my own for 14 years. Joining the group, I realised how much I'd been carrying alone. Now I have people to message at 2am when the pain won't let me sleep."
"My peer mentor lives a totally different life from mine, different city, different age, different culture. But she gets it. When she says 'I know,' I actually believe her."
"The monthly meet-ups in Christchurch are the highlight of my month. We don't even talk about the condition half the time. Just kai and laughs with people who don't need anything explained."
Tell us a bit about you. We'll review and follow up within 3 working days. Your details stay private.
Whether you're newly diagnosed or 20 years in, you're welcome here.
