References & Sources

1. Thalassaemia (medical)

1. World Health Organization. Genes and human disease: Genes and Chromosomal Diseases. WHO, 2024. who.int/genomics/public/geneticdiseases
2. Thalassaemia International Federation (TIF). Guidelines for the Management of Transfusion Dependent Thalassaemia (TDT), 4th edition. Nicosia: TIF, 2021. thalassaemia.org.cy
3. NHS UK. Beta Thalassaemia: overview. National Health Service, updated 2024. nhs.uk/conditions/thalassaemia
4. National Institutes of Health (NIH). What Are Thalassemias? National Heart, Lung, and Blood Institute, 2024. nhlbi.nih.gov/health/thalassemia
5. Origa R. "Beta-thalassemia." Genetics in Medicine, 2017; 19(6): 609-619. doi:10.1038/gim.2016.173
6. Galanello R, Origa R. "Beta-thalassemia." Orphanet Journal of Rare Diseases, 2010; 5: 11. doi:10.1186/1750-1172-5-11

2. Sickle Cell Disease (medical)

1. Centers for Disease Control and Prevention (CDC). Sickle Cell Disease. CDC, 2024. cdc.gov/ncbddd/sicklecell
2. Sickle Cell Disease Association of America. Living with SCD. SCDAA, 2024. sicklecelldisease.org
3. British Society for Haematology. Standards for the clinical care of adults with sickle cell disease in the UK, 3rd edition. 2018.
4. Piel FB, Steinberg MH, Rees DC. "Sickle Cell Disease." New England Journal of Medicine, 2017; 376(16): 1561-1573. doi:10.1056/NEJMra1510865
5. NICE Guidelines. Sickle cell disease: managing acute painful episodes in hospital (CG143). National Institute for Health and Care Excellence, UK, 2012, reviewed 2020.
6. Yawn BP et al. "Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members." JAMA, 2014; 312(10): 1033-1048.

3. Carrier Status & Genetics

1. NHS England. NHS Sickle Cell and Thalassaemia Screening Programme. Public Health England, updated 2024.
2. American College of Obstetricians and Gynecologists (ACOG). Committee Opinion No. 691: Carrier Screening for Genetic Conditions. Obstet Gynecol, 2017; 129(3).
3. Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Pre-pregnancy Counselling Statement (C-Obs 3a). 2024.
4. Genetic Health Service New Zealand. Haemoglobinopathies: information for patients. 2024.
5. Modell B, Darlison M. "Global epidemiology of haemoglobin disorders and derived service indicators." Bulletin of the World Health Organization, 2008; 86(6): 480-487.

4. Treatment & Care

1. Cappellini MD et al. "A Phase 3 Trial of Luspatercept in Patients with Transfusion-Dependent β-Thalassemia." New England Journal of Medicine, 2020; 382: 1219-1231.
2. Locatelli F et al. "Betibeglogene autotemcel gene therapy for non-β0/β0 genotype β-thalassemia." New England Journal of Medicine, 2022; 386(5): 415-427.
3. Frangoul H et al. "CRISPR-Cas9 Gene Editing for Sickle Cell Disease and β-Thalassemia." New England Journal of Medicine, 2021; 384(3): 252-260.
4. British Society for Haematology. Guidelines on red cell transfusion in sickle cell disease. 2017.
5. Pharmaceutical Management Agency (Pharmac), New Zealand. Pharmaceutical Schedule, 2024. Listings for hydroxycarbamide, deferasirox, deferiprone, desferrioxamine.

5. Internal Statistics

The following statistics are internal to Muskaan Care Trust, drawn from our service records and Annual Report.

1. "1,200+ lives supported" (home page, multiple pages), Muskaan Care Trust Annual Report 2025. Counts distinct individuals receiving at least one direct service interaction in the calendar year.
2. "24+ active volunteers", Muskaan Care Trust volunteer roster, May 2026.
3. "8,421 volunteer hours / year", Volunteer time logged via Muskaan portal, 1 Jan to 31 Dec 2025.
4. "42 community partners", Partnership register, May 2026.
5. "284+ whānau in active care", TASCA NZ caseload, May 2026.
6. "88% to programmes" (Financial Transparency page), Audited financial statements 2025, Cook Daly Chartered Accountants.
7. "NZ$687,000 total income 2025", Audited financial statements 2025.
8. "100+ hospitals listed" (NZ Hospitals page), Compiled from Te Whatu Ora regional hospital listings and NZ Private Hospitals Association directory, verified May 2026.
9. "11,000+ signatures" (Newborn Screening page), Petition tally as of June 2026.
10. "6+ languages spoken", Internal team languages and accredited interpreters.

6. External Statistics & Policy

1. Modell B, Darlison M. "Global epidemiology of haemoglobin disorders." WHO Bulletin, 2008. (Source for "more than 1 in 25 globally carry a thalassaemia gene".)
2. "60+ countries with universal newborn screening", International Society for Neonatal Screening (ISNS), isns-neoscreening.org, updated 2024.
3. "14,000+ NEET youth in NZ", Stats NZ Household Labour Force Survey, March 2026 quarter.
4. "OECD family violence rates", OECD Better Life Index, 2024.
5. Te Whatu Ora — Health New Zealand. Consumer Council Terms of Reference. 2024.
6. Public Health Association of New Zealand. Beyond the Blood: A call to action for haemoglobin disorders in Aotearoa. PHANZ, December 2025. (Available via our website.)

7. Cultural Practice References

1. Durie M. Whaiora: Māori Health Development. Oxford University Press, 1998.
2. Pacific Health Research Centre, University of Auckland. Various publications on Pacific health frameworks.
3. Asian Family Services. Cultural Competency Framework. 2023.
4. Suaalii-Sauni T et al. "Pacific conceptualisations of family health." Pacific Health Dialog, multiple issues.
5. Mental Health Foundation of New Zealand. Cultural safety in mental health practice. 2024.

8. How to cite this site

If you'd like to cite content from muskaancaretrust.org.nz in your own work:

Errors or missing sources?

If you spot an error or a claim that should have a source it doesn't, please email tascanz@muskaancaretrust.org.nz. We update this page within 10 working days of any correction.