Through lobbying and engaging healthcare providers, TASCA advocates on behalf of patients and their families for equitable access to best care and support as well as adequate funding for impactful research into the treatment of haemoglobin disorders.
TASCA works to raise public awareness and reduce the stigma of haemoglobin disorders through school visits, public events and media engagement. We believe in the importance of knowing your own genetic status through carrier testing.
TASCA believes that care should extend beyond the treatment centre. We support those affected by haemoglobin disorders through peer support and social events. We also empower patients and families through education and information.
Here at TASCA, we are driven by a single goal – to do our part in making the world a better place for those living with genetic blood disorders.
Protection through Prevention
Digital Literacy
Mental Health and addiction support
Community Wellness
PEER SUPPORT & COACHING
Mental and Spiritual Health
Awareness
TASCA works to raise public awareness and reduce the stigma of haemoglobin disorders through school visits, public events and media engagement. We believe in the importance of knowing your own genetic status through carrier testing.
Through lobbying and engaging healthcare providers, TASCA advocates on behalf of patients and their families for equitable access to best care and support as well as adequate funding for impactful research into the treatment of haemoglobin disorders.
TASCA believes that care should extend beyond the treatment centre. We support those affected by haemoglobin disorders through peer support and social events. We also empower patients and families through education and information.
DIVERSITY COMMUNITY NETWORK
The PAN Asian population was noted to be the second largest population group in the Auckland region in the 2006 Census. It is expected to increase in the coming years. The population is very diverse in terms of country of origin, language, length of stay, religious and cultural affiliation and socio-economic status.
Research
Training
Self Management Support (SMS Aotearoa NZ) is one of our alliance service provider imparting
Self - Care, Self - Awareness , Self- Compassion & Self - Management Support to our affected tanagta and their whanau/ families living with chronic health, mental health and blood disorders...
THE HOPE PROGRAMME - HELPS PREVENT TYPE 2 DIABETES
Treatment include:
These are life-saving treatments, but can come with their own side-effects and serious complications.
Well-treated
haemoglobin disorders can still affect wellbeing, playing sport and
daily activities, but overall most people have a high quality of life.
Thalassaemia
is passed from parent to child in genes. Genes carry information about
human characteristics such as eye colour, hair colour and haemoglobin.
Thalassaemia is inherited. Thalassaemia is not contagious. Thalassaemia
is not transmitted by germs
Sometimes changes occur to genes,
resulting in medical conditions. Such changes occur to alpha globin
genes in alpha (a) thalassaemia:
Thalassaemia
is passed from parent to child in genes. Genes carry information about
human characteristics such as eye colour, hair colour and haemoglobin.
Thalassaemia is inherited. Thalassaemia is not contagious. Thalassaemia
is not transmitted by germs.
Sometimes changes occur to genes,
resulting in medical conditions. Such changes occur to beta globin genes
in beta (b) thalassaemia:
Haemoglobin
E (HbE) is an inherited condition caused by the production of an
abnormal haemoglobin protein. Haemoglobin is a protein in the blood that
carries oxygen around our bodies. HbE is passed from parent to child in
genes. Genes carry information about human characteristics such as eye
colour, hair colour and haemoglobin. HbE is inherited. HbE is not
contagious. HbE is not transmitted by germs.
Sometimes changes occur to genes, resulting in medical conditions. Such changes occur to beta (b) globin genes:
Chairperson, Trustee
Trustee
Trustee
Executive Board Member, IT infrastructure
Consultant and Advisor (Volunteer), TASCA NZ and Protection Through Prevention
Yoga and Wellness Expert, SMS Leader, Connecting the DOTS (Volunteer)
Volunteer, Connecting the DOTS
Executive Board member
Volunteer
Executive Board Member
Clinical and Technical Advisor
Person Living with Thalassaemia in NZ, Member of Muskaan Care Trust NZ
Query for support from Person Living with Thalassaemia in NZ,
Now became member of TASCA NZ at Muskaan Care Trust NZ
Community Member, Waikato NZ
Community Member from Waikato NZ ; Appreciating the work being done by TASCA NZ at Muskaan Care Trust
Lived experience and advocate for people living with Thalassaemia in NZ
Heartfelt advocacy by our members living with thalassaemia and imparting confidence and addressing stigma attached with these invisible disabilities.
Gene therapy is poised to break the stratosphere, providing many rare disease patients with an option out of their diseases. Whether innovations in CAR T-cell therapy or the rise of CRISPR, never before have patients had such a variety of therapeutic options becoming available. And the future is here. Just last December, the U.S. Food and Drug Administration (FDA) approved the first two cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older—one of which utilizes CRISPR technology. However, one glaring issue is blocking the path to success: who pays for the treatment? More information read here - https://bio.news/health/bio-2024-international-convention-gene-therapy-payment-models-bluebird-bio-vertex-pharmaceuticals/?fbclid=IwZXh0bgNhZW0CMTEAAR0Vn2LNtTHn4qcGwA7ffasyJQZyGJqzVut98f9J3OtWHTb9eCLK5PLr-Ik_aem_71qOwLShNmEfie4uslcTPA
TIF, its Board of Directors and its International Scientific Advisory Board proudly present the 4th Edition of the Federation’s most prestigious and renowned publication, the TIF Guidelines for The Management of Transfusion- Dependent Thalassaemia (TDT).
The latest TASCA newsletter is out now. Contents: Light Up Australia AGM Announcement Raffle Winners
World Hepatitis Day held on 28 July is an opportunity to step up national and international efforts on hepatitis. Although preventative measures such as donor and blood screening have increased blood safety and have virtually removed the risk of transfusion-transmitted infections in Australia, chronic hepatitis remains a concern in the genetic haemoglobin disorder community in Australia due to past infection and internationally due to still inadequate blood safety measures.
