Whether you're newly diagnosed, supporting a loved one, or a carrier wanting to understand what it means, we're here.
Plain-language overviews. Each links to a fuller fact sheet, a peer support group, and a clinical pathway.
Caused by missing or faulty alpha-globin genes. Severity ranges from silent carrier to severe forms requiring transfusion. Common in South Asian, Mediterranean, and Pacific communities.
Get support →The most serious form, usually diagnosed in childhood. Requires regular blood transfusions and iron-chelation therapy. We support whānau through every step of the care pathway.
Get support →Carrier status, often without symptoms, but important to know before family planning. We offer free genetic counselling and partner-testing referrals.
Get support →Causes red blood cells to change shape, leading to pain crises and complications. We connect patients with specialists, advocate for emergency-care training, and run peer groups.
Get support →Confidential support, call or message us. We respond within 24 hours, in English, Hindi, Urdu, Samoan, or Mandarin.
An advocate can attend appointments with you, help you understand decisions, and follow up with your care team.
For newly diagnosed families, emotional support and practical planning, separately or together.
We match you with someone who's lived a similar journey. Sometimes that's everything.
Help with ACC, WINZ, disability supports, school accommodations, and workplace rights.
A private group where members swap tips, vent, and celebrate the wins big and small.
Free tools to use, share, or save for reference.
A searchable directory of every public and private hospital across Aotearoa, with phone numbers, services, and one-tap directions.
Fact SheetsPlain-language fact sheets for whānau, clinicians, schools, and employers, covering Alpha, Beta Major, Beta Minor, and Sickle Cell.
HelplinePocket-sized card with the numbers you need most, 111, Healthline, Muskaan helpline, NZ Blood Service.
You don't need a referral. You don't need a diagnosis. You just need to ask.
Contact a support worker