| 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]. | Respiratorisk
> Lungesykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nevromuskulær
> Muskeldystrofi | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Kreft
> Kreft: de fleste typer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Nyre
> Nyresykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Respiratorisk
> Astma | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | Over 100,000 | National | Regularly | 119051065145 |
| PBAC [Pharmaceutical Benefits Advisory Committee] comments. | Hud
> Atopisk dermatitt/eksem | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | Over 100,000 | National | Regularly | 119051082840 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorisk
> Lungesykdommer | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Sjelden
> Sjeldne lidelser: genetisk | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Gastrointestinal
> IBD | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | Over 100,000 | National | Regularly | 119058351283 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Kardiovaskulær
> Kardiovaskulære & hjertetilstander | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Psykisk helse
> Psykisk helse: de fleste tilstander | Regulatorisk partnerskap
> Delta i vurderinger av medisinsk teknologi (HTA) og refusjonsgjennomganger | 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. | Respiratorisk
> Astma | Regulatorisk partnerskap
> Bidra til innsendinger for markedsføringstillatelse | 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. | Nevromuskulær
> Muskeldystrofi | Regulatorisk partnerskap
> Delta/fasilitere møter med beslutningstakere/regulatorer | 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. | Psykisk helse
> Psykisk helse: de fleste tilstander | Regulatorisk partnerskap
> Med andre helseadvokater | 10 000 | National | Sometimes | 119074282308 |
| Regular advocacy and lobbying to all levels of government on new and current diabetes medications and technology. | Endokrin
> Diabetes (både type 1 og type 2) | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Respiratorisk
> Astma | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Gastrointestinal
> IBD | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | Over 100,000 | National | Regularly | 119058351283 |
| Where possible, we add our advocacy voice to decision-makers. | Nevromuskulær
> Muskeldystrofi | Påvirkning av politikk og lovgivning
> Påvirk helsepolitikk og lovgivning | 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. | Nyre
> Nyresykdommer | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | Do not know | National | Regularly | 119051003447 |
| Public submissions. | Medisinsk forskning
> Medisinsk forskning | Påvirkning av politikk og lovgivning
> Delta i offentlige høringer og konsultasjoner | 100 | National | Sometimes | 119075599019 |
| Pre-Budget Submissions, Advocacy activities, Meetings. | Reumatisk
> Revmatiske sykdommer: de fleste typer | Påvirkning av politikk og lovgivning
> Mobiliser parlamentarikere og politiske ledere | Over 100,000 | National | Regularly | 119017682842 |
| Weight loss drugs, general medicine costs. | Pasientadvokasi
> Pasientrettigheter | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 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. | Gastrointestinal
> IBD | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | Over 100,000 | National | Regularly | 119058351283 |
| Pricing. | Reumatisk
> Lupus | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 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. | Nevrologisk
> Nevrologisk: annet | Prising og tilgjengelighetsadvokatur
> Gå inn for rettferdig medisinprising | 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. | Smittsom
> Immunisering | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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. | Bein
> Fibrodysplasia ossificans progressiva (FOP) | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 100 | National | Rarely | 119044789085 |
| Australia's PBS [Pharmaceutical Benefits Scheme] listings as an example. | Nyre
> Nyresykdommer | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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. | Sjelden
> Sjeldne lidelser: genetisk | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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. | Psykisk helse
> Psykisk helse: de fleste tilstander | Prising og tilgjengelighetsadvokatur
> Arbeide for inkludering av produkt i refusjonslister/nasjonale formularer | 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. | Nevromuskulær
> Muskeldystrofi | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 1 000 | National | Regularly | 119021570524 |
| Weight loss drugs, general medicine costs. | Pasientadvokasi
> Pasientrettigheter | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 100 000 | National | Sometimes | 119055318270 |
| Regulations and restrictions regarding prescribing of antivirals for COVID to our patient cohort [neurological conditions]. | Nevrologisk
> Nevrologisk: annet | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 5 000 | National | Rarely | 119056702514 |
| PBAC [Pharmaceutical Benefits Advisory Committee], MSAC [Medical Services Advisory Committee], PL [Prostheses List]. | Kardiovaskulær
> Kardiovaskulære & hjertetilstander | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Nevrologisk
> Nevrologisk: annet | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | We do not communicate with patients directly | National | Regularly | 119069368666 |
| Through an HTA [Health Technology Assessment] implementation review. | Nevrologisk
> Nevrologisk: annet | Forbedrer tilgangsveier
> Legge til rette for rettferdig tilgang til medisiner/helsetjenester | 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. | Smittsom
> Immunisering | Forbedrer tilgangsveier
> Gå inn for bredere vaksinetilgang | 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. | Bein
> Fibrodysplasia ossificans progressiva (FOP) | Forbedrer tilgangsveier
> Forbedring av tilgang til sjeldne/ultrasjelne terapier | 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. | Nyre
> Nyresykdommer | Evidensbasert pasientinnspill
> Bruk pasientinnsikt til å informere beslutninger | 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]. | Respiratorisk
> Lungesykdommer | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | 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. | Kreft
> Kreft: de fleste typer | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | We do not communicate with patients directly | Regional | Sometimes | 119031444677 |
| HTA [Health Technology Assessment] — lived experience. | Respiratorisk
> Lungesykdommer | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | 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. | Psykisk helse
> Psykisk helse: de fleste tilstander | Evidensbasert pasientinnspill
> Bruk pasienthistorier og fortellinger fra levd erfaring | 10 000 | National | Sometimes | 119074282308 |
| Pricing, clinical trials. | Reumatisk
> Lupus | Diagnose og medisinlevering
> Samarbeid om utforming av kliniske studier | 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. | Sjelden
> Sjeldne lidelser: genetisk | Diagnose og medisinlevering
> Støtte til screening og tidlig oppdagelse | 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. | Sjelden
> Sjeldne lidelser: genetisk | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 1 000 | National | Sometimes | 119054286714 |
| Preterm Infants Parents Association [PIPA] has representatives on numerous hospital and Queensland Health Department committees. | Barns helse
> Neonatal | Institusjonell styring
> Sikre representasjon i statlige rådgivende organer | 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. | Nevrologisk
> Nevrologisk: annet | Institusjonell styring
> Arbeide effektivt i nettverk med flere interessenter | We do not communicate with patients directly | National | Regularly | 119069368666 |
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