| Lived experience submissions on new treatments and medicines, part of national working group looking at HTA reform, part of industry campaign to improve timeliness of HTA approval [Australia]. | Respiratoir
> Longziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119011106646 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Regularly | 119021570524 |
| We support and advocate for enhancement of the involvement of patients/carers in Health Technology. We have been involved in the Co design group Enhancing Consumer involvement in Australian Health technology assessment and in the HTA Review process. | Kanker
> Kanker: de meeste soorten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Nier
> Nierziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Do not know | National | Regularly | 119051003447 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee [PBAC] for the reimbursement of medicines relating to asthma, including some vaccines. | Respiratoir
> Astma | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Huid
> Atopische dermatitis/eczeem | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratoir
> Longziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119051865995 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Sometimes | 119054286714 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Maagdarmkanaal
> IBD | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovasculair
> Hart- en vaatziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Do not know | International | Regularly | 119061299937 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Geestelijke gezondheid
> Geestelijke gezondheid: de meeste aandoeningen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Sometimes | 119074282308 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee for the reimbursement of medicines relating to asthma, including some vaccines. We write and support submissions to the Therapeutic Goods Administration for changes to medicines. Asthma Australia will lobby government if a change that is made is not in the best interest of people with asthma. | Respiratoir
> Astma | Regelgevend partnerschap
> Bijdragen aan indieningen voor Handelsvergunningen | Over 100,000 | National | Regularly | 119051065145 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 1.000 | National | Regularly | 119021570524 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. | Geestelijke gezondheid
> Geestelijke gezondheid: de meeste aandoeningen | Regelgevend partnerschap
> Met andere zorgadvocaten | 10.000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endocrien
> Diabetes (zowel type 1 als type 2) | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | Over 100,000 | National | Regularly | 119023443093 |
| We provide public comment to the Pharmaceutical Benefits Advisory Committee for the reimbursement of medicines relating to asthma, including some vaccines. We write and support submissions to the Therapeutic Goods Administration for changes to medicines. Asthma Australia will lobby government if a change that is made is not in the best interest of people with asthma. | Respiratoir
> Astma | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | Over 100,000 | National | Regularly | 119051065145 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Maagdarmkanaal
> IBD | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Neuromusculair
> Spierdystrofie | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | National | Rarely | 119070072574 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Nier
> Nierziekten | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Medisch onderzoek
> Medisch onderzoek | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Reumatisch
> Reumatische aandoeningen: de meeste typen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 100.000 | National | Sometimes | 119055318270 |
| Involved in government [Australia] policy reviews - HTA review and Chronic Disease - submit responses to TGA [Therapeutic Goods Administration], MSAC [Medical Services Advisory Committee], and PBAC [Pharmaceutical Benefits Advisory Committee] in relation to sponsor requests. | Maagdarmkanaal
> IBD | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumatisch
> Lupus | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 5.000 | International | Regularly | 119058972997 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurologisch
> Neurologisch: overig | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | We do not communicate with patients directly | National | Regularly | 119069368666 |
| We will sometimes complete Consumer Comments for the Pharmaceutical Benefits Advisory Committee if we feel that an immunization should be federally funded on the National Immunization Program. | Infectieus
> Immunisatie | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | Over 100,000 | National | Sometimes | 119022383972 |
| Access to Palovarotene [to reduce the formation of abnomal bone tissue in people with It is indicated for patients with the ultra-rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP)] via the PBS [Pharmaceutical Benefits Scheme] listing. | Bot
> Fibrodysplasia ossificans progressiva (FOP) | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Nier
> Nierziekten | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 5.000 | National | Regularly | 119050789619 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 1.000 | National | Sometimes | 119054286714 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Geestelijke gezondheid
> Geestelijke gezondheid: de meeste aandoeningen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 10.000 | National | Sometimes | 119074282308 |
| Work with PBAC [Pharmaceutical Benefits Advisory Committee], HTA [Health Technology Assessment], TGA [Therapeutic Goods Administration], and MSAC [Medical Services Advisory Committee], as well as patient groups and Medicines Australia Australia to advocate for access and equity for treatments and care. | Neuromusculair
> Spierdystrofie | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Patiëntenbelangenbehartiging
> Patiëntenrechten | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 100.000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Neurologisch
> Neurologisch: overig | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 5.000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Cardiovasculair
> Hart- en vaatziekten | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | Do not know | International | Regularly | 119061299937 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurologisch
> Neurologisch: overig | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Neurologisch
> Neurologisch: overig | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | We do not communicate with patients directly | National | Regularly | 119069368666 |
| We will sometimes complete Consumer Comments for the Pharmaceutical Benefits Advisory Committee if we feel that an immunization should be federally funded on the National Immunization Program. | Infectieus
> Immunisatie | Toegangspaden verbeteren
> Pleit voor bredere toegang tot vaccins | Over 100,000 | National | Sometimes | 119022383972 |
| Access to Palovarotene [to reduce the formation of abnomal bone tissue in people with It is indicated for patients with the ultra-rare genetic disorder Fibrodysplasia Ossificans Progressiva (FOP)] via the PBS [Pharmaceutical Benefits Scheme] listing. | Bot
> Fibrodysplasia ossificans progressiva (FOP) | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 100 | National | Rarely | 119044789085 |
| Consumer feedback to PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], government consultations, and other organisations on behalf of those with kidney disease. | Nier
> Nierziekten | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | Do not know | National | Regularly | 119051003447 |
| Lived experience submissions on new treatments and medicines, part of national working group looking at HTA reform, part of industry campaign to improve timeliness of HTA approval [Australia]. | Respiratoir
> Longziekten | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | Over 100,000 | National | Regularly | 119011106646 |
| We support and advocate for enhancement of the involvement of patients/carers in Health Technology. We have been involved in the Co design group Enhancing Consumer involvement in Australian Health technology assessment and in the HTA Review process. | Kanker
> Kanker: de meeste soorten | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratoir
> Longziekten | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | Over 100,000 | National | Regularly | 119051865995 |
| Our organisation exists to represent the interests of both community-led mental health service organisations and also the lived experience consumer community. A recent example of our work representing patient interests to regulators that are responsible for deciding drug pricing was recent correspondence we issued to the Australian Pharmaceutical Benefits Advisory Committee, requesting that a drug for the treatment of schizophrenia be listed on the Pharmaceutical Benefits Scheme. In this correspondence, we directly represented the views of patients and family and carers. | Geestelijke gezondheid
> Geestelijke gezondheid: de meeste aandoeningen | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 10.000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Reumatisch
> Lupus | Diagnose en medicijnbezorging
> Samenwerken aan het ontwerp van klinische proeven | 5.000 | International | Regularly | 119058972997 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Diagnose en medicijnbezorging
> Ondersteuning bij screening en vroege opsporing | 1.000 | National | Sometimes | 119054286714 |
| We provide expertise to regulatory and funding decision-makers on topics like newborn screening, medicine listing, and model of care funding. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 1.000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Gezondheid van kinderen
> Neonataal | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 5.000 | Regional | Regularly | 119074312093 |
| Through an HTA [Health Technology Assessment] implementation review, direct advocacy around drug access and pricing, part of roundtables to more effectively advocate patient interests for change. | Neurologisch
> Neurologisch: overig | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | We do not communicate with patients directly | National | Regularly | 119069368666 |
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