Thalassaemia and Sickle Cell Aotearoa, New Zealand
A consumer-led programme of Muskaan Care Trust delivering advocacy, education, and culturally safe support for New Zealanders living with thalassaemia and sickle cell anaemia.
TASCA NZ was co-founded by Vivek Vij, Chairperson of Muskaan Care Trust and an IT engineer living with thalassaemia. It was established to address the long-standing absence of haemoglobinopathies from New Zealand's public health agenda.
Thalassaemia and sickle cell anaemia are inherited blood disorders that disproportionately affect ethnic minority communities of African, South Asian, Southeast Asian, and Mediterranean descent. As Aotearoa's population grows more diverse, the demand for culturally safe, evidence-based care continues to rise.
TASCA NZ represents ethnic consumer voices on the Consumer Council of Te Whatu Ora, Health New Zealand, ensuring lived experience informs national health policy.
New Zealanders living with these conditions
Major affected ethnic communities
Confidential peer support, NZ-wide
Year TASCA NZ was established
Inherited blood disorders affect families across Aotearoa, particularly within migrant and refugee communities. Awareness is limited, and most families first encounter these conditions at the point of diagnosis.
From lived experience to community action, national advocacy and system change.
Continued bringing patient and whānau voices into health policy, screening, medicine access, culturally responsive care and system-design conversations.
Elevated thalassaemia and sickle cell disease within public-health conversations, professional forums and community awareness.
Extended engagement across migrant, refugee, Asian, Pacific and other diverse communities while strengthening health literacy, navigation, wellbeing and peer-support initiatives.
Expanded connections across New Zealand and Australia for peer support, rare-disorder advocacy and shared learning.
Strengthened New Zealand's connection with the international thalassaemia community and amplified lived-experience advocacy.
Expanded the Community VAX Champion model, taking preventive healthcare closer to communities through trusted partnerships and culturally responsive engagement.
Mobilised trusted community networks to provide culturally and linguistically responsive information, health-system navigation and practical support to migrant and ethnic communities.
Collaborated with Counties Manukau Health, pharmacy partners and 19 South Asian organisations to develop culturally connected, community-led approaches to prevention, vaccination and health engagement.
A dedicated lived-experience-led platform giving people and whānau affected by inherited haemoglobin disorders a stronger voice in Aotearoa.
Established from lived experience and a commitment to support underserved communities through health education, connection, navigation and advocacy.
TASCA NZ continues to connect lived experience, peer support, genetic and health literacy, culturally responsive navigation, prevention, research, professional education and policy advocacy — working towards an Aotearoa where no person or whānau affected by thalassaemia, sickle cell disease or another inherited haemoglobin disorder is left behind.
Our theory of changeOur work spans national policy advocacy through to one-on-one peer support — meeting whānau wherever they are.
Representing ethnic consumer voices on the Consumer Council of Te Whatu Ora, and contributing submissions on screening, equity, and culturally safe care.
Plain-language information, genetic literacy workshops, and awareness campaigns, designed with the South Asian, African, Southeast Asian, and Mediterranean communities most affected.
Free wellbeing counselling, peer support, mental health services, self-care education, and self-management training for patients and their whānau.
All services are free, confidential, and open to anyone affected — patients, parents, siblings, and partners alike.
One-to-one counselling with practitioners experienced in chronic illness, identity, and migration.
Connection with mentors who live with thalassaemia or sickle cell and understand the journey first-hand.
Guidance through the emotional impact of a lifelong condition — for patients, parents, and partners.
Practical workshops on iron management, infection prevention, hydration, nutrition, and energy pacing.
Tools and frameworks for managing appointments, medications, treatment plans, and clinical conversations.
A closed peer network for people living with thalassaemia or sickle cell — a moderated, confidential space.
A clear pathway from first contact to ongoing support, designed around the person — not the system.
Reach out by phone, email, or through our online community. Confidential, free, and no referral required.
A confidential conversation, in your preferred language, to understand your situation and identify priorities.
Practical help understanding your diagnosis, connecting with specialists, and accessing entitlements.
Peer mentoring, counselling, family support, and community connection — for as long as it is needed.
Both are inherited (genetic) blood disorders that affect the body's production of healthy red blood cells.
Caused by missing or faulty alpha-globin genes. Severity ranges from silent carrier to Haemoglobin H disease and more severe forms. Most prevalent in communities of South Asian, Southeast Asian, Chinese, Middle Eastern, and Mediterranean descent.
The most serious form, typically diagnosed in infancy. Requires lifelong blood transfusions (every 3–4 weeks) and iron-chelation therapy. With high-quality care, people lead full lives, though the daily clinical burden remains significant.
Carrier status — generally asymptomatic, occasionally accompanied by mild anaemia. Important to identify prior to family planning: two carriers have a 25% probability of a child with the major form. Genetic counselling is available.
Red blood cells take a crescent (sickle) shape, restricting blood flow. Causes painful crises, anaemia, and organ complications. Most prevalent in communities of African, Mediterranean, Middle Eastern, and South Asian descent.
Our 2025 position paper, produced with the Public Health Association of New Zealand, calls for a coordinated national response — universal newborn screening, equitable access to specialist care, and culturally safe support for whānau.
Reflections from whānau living with these conditions and the clinicians who walk alongside them.
"When my son was diagnosed with beta thalassaemia major, I felt completely alone. TASCA NZ connected me with another mum who understood. That phone call changed everything."
"I've lived with sickle cell my whole life, but the peer group at TASCA NZ was the first time I sat in a room with people who really got it. Without judgment. Without explanation."
"As a GP, I learned more from TASCA NZ's workshops than I did in medical school about haemoglobinopathies. They've made it possible for me to actually help my patients."
Awareness of these conditions remains limited in the wider population, yet for migrant and refugee families from at-risk regions they are often life-defining.
Responses to the questions most commonly raised by whānau, clinicians, and community members.
No. Thalassaemia is an inherited (genetic) condition. You can only have it if both of your parents pass on a thalassaemia gene to you. It can't be caught from another person.
Yes. Two carriers (both with thalassaemia minor) have a 25% chance of having a child with thalassaemia major, a 50% chance of a carrier child, and a 25% chance of a child completely free of thalassaemia. Genetic counselling can help families understand their options.
Thalassaemia minor (also called "carrier" or "trait") usually causes no symptoms and doesn't need treatment. Thalassaemia major is a serious condition that requires lifelong blood transfusions and iron-chelation therapy. Major is usually diagnosed in infancy.
Treatment focuses on managing pain crises and preventing complications. Common approaches include hydroxyurea, blood transfusions, and sometimes bone marrow transplant. Acute pain crises are managed with hydration, oxygen, and appropriate pain relief.
Bone marrow (stem cell) transplant can cure thalassaemia and sickle cell disease for some patients, but it's a serious procedure with real risks. Gene therapy is showing strong promise in clinical trials. For now, most patients manage their condition with ongoing medical care and support.
Testing is especially important for people of South Asian, African, Mediterranean, or Southeast Asian descent, and for anyone planning a family with a partner from these communities. Talk to your GP about a simple blood test for haemoglobinopathy screening.
Public healthcare (Te Whatu Ora) covers most thalassaemia and sickle cell care for NZ residents, including transfusions and clinical appointments. TASCA NZ helps you navigate the system and advocates for additional supports where needed.
Yes, in most cases. Having a relative with thalassaemia doesn't disqualify you. The NZ Blood Service screens all donations, and your blood could save a life, patients with thalassaemia major need ongoing transfusions throughout their lives.
A simple blood test called a "haemoglobinopathy screen" or "haemoglobin electrophoresis" can identify if you carry the thalassaemia or sickle cell trait. Ask your GP, or reach out to TASCA NZ for guidance on accessing testing in your area.
Yes. We support whānau across all of Aotearoa, including Wellington, Christchurch, Hamilton, and rural areas. Most of our services are available remotely (phone, video, online community), and we partner with local providers for in-person care.
People with beta thalassaemia major rely on regular transfusions. Register as a donor through NZ Blood Service.
Learn how →Living with thalassaemia or sickle cell? Apply to join our closed online community for lived-experience peer support.
Request access →Lived experience drives systemic change. Share your voice — anonymously or attributed, on your terms.
Get in touch →Your contribution directly funds counselling sessions, peer mentors, education resources, and advocacy.
Donate →No referral or paperwork required — just a phone call or message. Confidential, free, and culturally safe.
Contact TASCA NZ