| Involvement with the German Federal Health Office (Bundesgesundheitsamt, BGA). | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Arbejde med regulerende myndigheder | 5.000 | National | Regularly | 119036570540 |
| A overarching role within the German statutory self-governing bodies. | Sjælden
> Sjældne sygdomme: genetisk | Regulatorisk partnerskab
> Arbejde med regulerende myndigheder | 5.000 | National | Regularly | 119037461600 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Kræft
> Kræft: prostata | Regulatorisk partnerskab
> Arbejde med regulerende myndigheder | 5.000 | National | Regularly | 119066077609 |
| The G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] has invited us to nominate a disease-specific patient representative for the early benefit assessment of a new medicinal product for PKU [Phenylketonuria]. | Sjælden
> Fenylketonuri (PKU) | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Rarely | 119012111929 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerativ
> Huntingtons sygdom | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119012382661 |
| Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany. | Kræft
> Kræft: æggestokke | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | Regional | Regularly | 119016020868 |
| Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood]. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119021710214 |
| We have two members involved in the areas of AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] and the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Kræft
> Kræft: prostata | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Regularly | 119021721162 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerativ
> Ataksi | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Regularly | 119023209361 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119031254796 |
| Gemeinsamer Bundesausschuss [Federal Joint Committee] – HTA [Health Technology Assessment]. | Ikke angivet
> Ikke angivet | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Sometimes | 119035820516 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Generelt helbred
> Fedme | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Sometimes | 119035837988 |
| Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Ikke angivet
> Ikke angivet | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Sometimes | 119036152561 |
| Representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], with advisory rights — though not voting rights — in proceedings relating to the additional benefit assessment of medicinal products and, where applicable, the consequent determination of pricing. | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Sometimes | 119040765109 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] decision on gene expression tests. | Kræft
> Kræft: bryst | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100 | National | Sometimes | 119044135956 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], IQWiG [Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen – Institute for Quality and Efficiency in Health Care], EMA [European Medicines Agency]. | Neuromuskulær
> Myasthenia gravis | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119055419948 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] assessment procedure forPegunigalsidase alfa. | Sjælden
> Fabrys sygdom | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Rarely | 119060598327 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Kræft
> Kræft: prostata | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119066077609 |
| We have patient representatives in the Joint Committee for AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products]. | Kræft
> Kræft: prostata | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Regularly | 119069535789 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Transplantationer
> Transplantationer: flest | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Sometimes | 119072853667 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurologisk
> Migræne/andre hovedpinelidelser | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | Regional | Regularly | 119078080419 |
| We submitted a statement in connection with a potential regulatory approval decision concerning a medicinal product, specifically addressing the proposed authorisation of a transition from a 14-day infusion regimen to a 4-weekly infusion schedule. | Sjælden
> Fabrys sygdom | Regulatorisk partnerskab
> Bidrag til ansøgninger om markedsføringstilladelse | 100 | National | Rarely | 119015180995 |
| For example, in the development of clinical guidelines. | Generelt helbred
> Seksuel sundhed: andet | Regulatorisk partnerskab
> Involvering med organer for kliniske retningslinjer | 1.000 | National | Sometimes | 119060973871 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Kræft
> Kræft: prostata | Regulatorisk partnerskab
> Involvering med organer for kliniske retningslinjer | 5.000 | National | Regularly | 119066077609 |
| The G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] has invited us to nominate a disease-specific patient representative for the early benefit assessment of a new medicinal product for PKU [Phenylketonuria]. | Sjælden
> Fenylketonuri (PKU) | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 5.000 | National | Rarely | 119012111929 |
| Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood]. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 5.000 | National | Regularly | 119021710214 |
| Representation is usually in the hands of local sarcoma groups. We support them as required. | Kræft
> Kræft: sarkom | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | We do not communicate with patients directly | International | Sometimes | 119011263055 |
| Our lay patient advocacy organisation is expressly prohibited from participating in, or contributing to, decisions on drug pricing. We operate under the House of Cancer Self-Help (Haus der Krebsselbsthilfe), under the umbrella of the Deutsche Krebshilfe Foundation, based in Bonn. | Kræft
> Kræft: blære | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | 1.000 | National | Regularly | 119061069101 |
| Representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], with advisory rights — though not voting rights — in proceedings relating to the additional benefit assessment of medicinal products and, where applicable, the consequent determination of pricing. | Kræft
> Kræft: blod | Prisfastsættelse og overkommelighed
> Deltag i forhandlinger med prisrevisionsnævnet | 1.000 | National | Sometimes | 119040765109 |
| A dedicated round table on the AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] is planned, prompted by the absence of market launches following positive approval studies for innovative medicines. | HIV
> HIV | Prisfastsættelse og overkommelighed
> Deltag i forhandlinger med prisrevisionsnævnet | 100 | National | Sometimes | 119067399626 |
| For example, advocating for cost coverage of STI [Sexually Transmitted Infection] diagnostics following sexual violence. | Generelt helbred
> Seksuel sundhed: andet | Prisfastsættelse og overkommelighed
> Adresser omkostningsbarrierer for lavindkomst- og sårbare personer | Do not know | National | Rarely | 119079711468 |
| A dedicated round table on the AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] is planned, prompted by the absence of market launches following positive approval studies for innovative medicines. | HIV
> HIV | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 100 | National | Sometimes | 119067399626 |
| Adverse events and medication availability. | Blødning
> Blødningsforstyrrelser: de fleste typer | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 5.000 | National | Regularly | 119062915143 |
| Patients with PPS [Post-Polio Syndrome] are unable to take medications that place strain on respiratory function, musculature, or metabolism. | Smitsom
> Infektionssygdom: anden | Diagnose og medicinlevering
> Sikr sikker og effektiv medicinbrug | 1.000 | National | Regularly | 119044103374 |
| Adverse events and medication availability. | Blødning
> Blødningsforstyrrelser: de fleste typer | Diagnose og medicinlevering
> Sikr sikker og effektiv medicinbrug | 5.000 | National | Regularly | 119062915143 |
| Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood]. | Blødning
> Blødningsforstyrrelser: de fleste typer | Diagnose og medicinlevering
> Deltag i udvikling af kliniske retningslinjer | 5.000 | National | Regularly | 119021710214 |
| For example, in the development of clinical guidelines. | Generelt helbred
> Seksuel sundhed: andet | Diagnose og medicinlevering
> Deltag i udvikling af kliniske retningslinjer | 1.000 | National | Sometimes | 119060973871 |
| Introduction of newborn screening. | Immun
> Primære immundefekter | Diagnose og medicinlevering
> Støtte til screening og tidlig opdagelse | 1.000 | National | Regularly | 119078084362 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerativ
> Huntingtons sygdom | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 5.000 | National | Regularly | 119012382661 |
| Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany. | Kræft
> Kræft: æggestokke | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 1.000 | Regional | Regularly | 119016020868 |
| We have two members involved in the areas of AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] and the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Kræft
> Kræft: prostata | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 10.000 | National | Regularly | 119021721162 |
| Representative on the Federal Joint Committee [Gemeinsamer Bundesausschuss] for physicians and statutory health insurers. | Transplantationer
> Transplantationer: lever | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 5.000 | National | Regularly | 119035838851 |
| Representative on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Synshandicap
> Nethindelidelser | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 10.000 | National | Sometimes | 119035839364 |
| Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Ikke angivet
> Ikke angivet | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 10.000 | National | Sometimes | 119036152561 |
| We are a member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerativ
> Huntingtons sygdom | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 1.000 | National | Regularly | 119036314886 |
| A overarching role within the German statutory self-governing bodies. | Sjælden
> Sjældne sygdomme: genetisk | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 5.000 | National | Regularly | 119037461600 |
| We have patient representatives in the Joint Committee for AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products]. | Kræft
> Kræft: prostata | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 10.000 | National | Regularly | 119069535789 |
| Involvement in the EHA [European Hematology Association]. | Kræft
> Kræft: blod | Institutionel styring
> Effektivt arbejde i netværk med flere interessenter | 5.000 | National | Regularly | 119036570540 |
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