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New Zealand Amyloidosis Patients Association NZAPA
New Zealand
Приєднався 4 сер 2020
New Zealand Patients Association (NZAPA) brings to patients, carers, healthcare practitioners and all those vested in changing the landscape of Amyloidosis awareness and treatment via our recording sessions. This advocacy to educate and provide avenues of support are vitally important in order to provide hope for this devastating, and presently, terminal disease.
Thank you for watching and for more information, please go to 'www.amyloidosis.co.nz'.
Thank you for watching and for more information, please go to 'www.amyloidosis.co.nz'.
Amyloidosis; AA, AL, TTRwt (wild type) and TTR hereditary
A rendition of symptoms, organs effected and diagnosis for AA, AL and TTR (wild type and hereditary) Amyloidosis. Correct and early diagnosis is key to maintain longevity and quality of life for suffers.
Brought to you by the folks at New Zealand Amyloidosis Patients Association (NZAPA).
Brought to you by the folks at New Zealand Amyloidosis Patients Association (NZAPA).
Переглядів: 471
Відео
NZAPA; The reason behind the initiation and formation of the patient association.
Переглядів 1283 роки тому
CEO Jaime Christmas explains why New Zealand patient association needed to be established for Amyloidosis sufferers in the country. Listen to her testimony and help spread Amyloidosis awareness. Thank you to Taylor Wilson at Wilson Productions (wilsonproduction.com) and our supporters Akcea Therapeutics (akceatx.com) & Eidos Therapeutics (www.eidostx.com) for making this session possible.
Health & Well-being Outcomes For People With Rare Disease
Переглядів 563 роки тому
The Rare Disorder community is debilitated and increasingly impaired through structural oppression, bureaucratic hierarchies, cultural stereotypes, apathetic attitudes, all encouraged by market mechanisms and the way society is structured and organised. We are square pegs forced to fit into a round world, hemorrhaging in the process. It is time for action because support should be available to ...
Amyloidosis TTR-Wild Type Patients In New Zealand
Переглядів 6083 роки тому
TTR amyloidosis is a debilitating disease that if not diagnosed at the early stages, will cause the condition of the sufferers to deteriorate further until the point of death. Listen to two patients from New Zealand share their diagnosis experience, how having the disease has impacted their life and understand that amyloidosis wild type can effect anyone, including you. It is a silent killer. L...
AL Amyloidosis In New Zealand; Patient Story
Переглядів 5703 роки тому
Amyloidosis awareness among healthcare professionals is pivotal to ensuring that disease sufferers receive correct diagnoses and timely treatment. Listen as Phillip who was finally diagnosed with AL amyloidosis share his journey and hear his advice on what sufferers can do to ensure the best outcome. Thank you to the patients for freely sharing their experience for the benefit of others. We als...
Professional Trainer Alan Levi presentation at New Zealand Amyloidosis Conference
Переглядів 633 роки тому
One of the key areas in Amyloidosis care and well being is exercise and supplements. What should a person diagnosed with Amyloidosis TTR, AL or AA do to keep healthy and maintain muscle strength? Listen to professional PT Alan Levi as he shares his vast knowledge on the topics. Thank you Alan for your valuable expertise. For more details, go to www.alanlevipersonaltraining.co.uk or email alanle...
NZAPACONF2021 Prof. Ed Gane, Chief Hepatologist and transplant physician NZLTU.
Переглядів 4523 роки тому
Professor Ed Gane explains Amyloidosis and the liver, as well as genetic editing clinical trials at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-...
NZAPACONF2021 Genetic counsellor Kimberley Gamet on the process of genetic testing in New Zealand.
Переглядів 333 роки тому
Genetic counselor Kimberly Gamet shares on the process of genetic testing in New Zealand and why people should understand more about it.
NZAPACONF2021 Dr. Ola Niewiadomski, Gastroenterologist Eastern Health/St Vincent's Hospital
Переглядів 243 роки тому
Dr Ola Niewiadomski explains Amyloidosis and the gastrointestinal system at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Dr. Antonia Carroll, Neurologist, Neurophysiologist Westmead Amyloidosis Centre.
Переглядів 913 роки тому
Dr. Antonia Carroll explains Amyloidosis and the nerve system at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Dr. Tim Sutton, Cardiologist Consultant Middlemore Hospital.
Переглядів 973 роки тому
Dr Tim Sutton explains Amyloidosis and the heart at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Dr. Nezar Amir, Cardiologist & Echocardiography Specialist, WDHB.
Переглядів 743 роки тому
Dr Nezar Amir explains Amyloidosis and the heart at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Q&A with Dr Gibbs and Dr Mollee on everything Amyloidosis.
Переглядів 233 роки тому
Dr Simon Gibbs and Dr Peter Mollee tackles questions from conference attendees on the topic of Amyloidosis. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Dr. Peter Mollee, Haematologist Princess Alexandra Hospital.
Переглядів 713 роки тому
Dr Peter Mollee explains AL & AA Amyloidosis at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Dr. Simon Gibbs Director of the Victorian & Tasmanian Amyloidosis Services.
Переглядів 853 роки тому
Dr. Simon Gibbs explains TTR Amyloidosis at NZAPA Patients, Carers & Healthcare Practitioners Amyloidosis conference. Thank you to 'Alnylam Advocacy for Impact Grant' for making this conference possible for New Zealand. For more information on the grant please click here, www.alnylam.com/about-alnylam/grants-and-giving/advocacy-for-impact-grants/
NZAPACONF2021 Commencement and welcome.
Переглядів 213 роки тому
NZAPACONF2021 Commencement and welcome.
NZAPA EDU SERIES: Amyloidosis: Introduction, Diagnosis & Treatment of Cardiac Amyloidosis
Переглядів 1774 роки тому
NZAPA EDU SERIES: Amyloidosis: Introduction, Diagnosis & Treatment of Cardiac Amyloidosis
Hello sir how to contect you
Hello sir
Thank you for sharing your story. I can relate to your condition, and you make excellent points regarding the challenges involved in getting a proper diagnosis. I believe it’s safe to say, most cardiologists don’t have Amyloidosis on their radar…at least, not soon enough.
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This is gold, especially at minute 37th.