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Since starting the patient association for Amyloidosis, clinical trials have come to the shores of Aotearoa and not only that, have expanded even to the South Island. This is great news for sufferers particularly the hereditary and WT (wild type) type and the AL patients. People shouldn’t have to fend for themselves and be left to cut shot on their life just because we live out of Europe or the United States where treatment are accessible and funded.

As we expand on our vision of one day setting up a centre of excellence for Amyloidosis patients, we also cannot do this alone. We need like minded people who have a passion to help using the skills they possess so a lasting legacy can be made. We need people like you to come alongside us.

LET’S KEEP MAKING HEADWAY IN OUR ADVOCACY FOR AWARENESS AND EDUCATION

With knowledge comes power. The power to influence change and ensure every person diagnosed with Amyloidosis no matter the type can get the needed support. It is a critical win that starts off with proper correct diagnosis the moment someone sees their GP and thereon to be provided treatment. No matter where you live in New Zealand, accessible for patients across the country. Send a message to your family, friends, local MPs or representatives in your circle today to remind them that we need them to keep pushing for Amyloidosis disease awareness.

GOVERNMENT: PRIORITISE PATIENTS’ ACCESS TO FUNDED MEDICINE 

We need to make sure that access to funded treatment by Pharmac, particularly for rare diseases like Amyloidosis, is at the very top of everyone’s agenda. Send a message to your local area representative today, urging them to advance the policy priorities that will improve patients’ access to high-quality, affordable medication.

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