Press & media room

Vivek Vij · Chairperson & Spokesperson

Lived-experience advocate. Available for interview on thalassaemia, sickle cell, ethnic health equity, the "Beyond the Blood" think piece, and policy advocacy.

• Use person-first language: "person living with thalassaemia" rather than "thalassaemia patient".
• Avoid "sufferer" or "victim", these aren't how our community describes themselves.
• Photos: people with thalassaemia and sickle cell are not always "sick-looking". Our community lives full lives, please reflect that.
• For lived-experience interviews: please offer pseudonyms, sensitivity reads, and editorial input if requested.
• Avoid framing the conditions as "exotic" or "foreign", they're New Zealanders.
• When in doubt, ask. We'd rather help you get it right than read it later.