| Involvement with the German Federal Health Office (Bundesgesundheitsamt, BGA). | Cancer
> Cancer: blood | Regulatory partnership
> Working with regulatory bodies | 5,000 | National | Regularly | 119036570540 |
| A overarching role within the German statutory self-governing bodies. | Rare
> Rare disorders: genetic | Regulatory partnership
> Working with regulatory bodies | 5,000 | National | Regularly | 119037461600 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Cancer
> Cancer: prostate | Regulatory partnership
> Working with regulatory bodies | 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]. | Rare
> Phenylketonuria (PKU) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Rarely | 119012111929 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerative
> Huntington’s disease | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119012382661 |
| Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany. | Cancer
> Cancer: ovarian | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Cancer
> Cancer: prostate | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Regularly | 119021721162 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerative
> Ataxia | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Regularly | 119023209361 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119031254796 |
| Gemeinsamer Bundesausschuss [Federal Joint Committee] – HTA [Health Technology Assessment]. | Not Specified
> Not specified | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Sometimes | 119035820516 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | General health
> Obesity | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Sometimes | 119035837988 |
| Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Not Specified
> Not specified | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 119040765109 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] decision on gene expression tests. | Cancer
> Cancer: breast | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Neuromuscular
> Myasthenia gravis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119055419948 |
| G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] assessment procedure forPegunigalsidase alfa. | Rare
> Fabry disease | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Rarely | 119060598327 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Cancer
> Cancer: prostate | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Cancer
> Cancer: prostate | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Regularly | 119069535789 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Transplants
> Transplants: most | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 119072853667 |
| GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurological
> Migraine/other headache disorders | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Rare
> Fabry disease | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 100 | National | Rarely | 119015180995 |
| For example, in the development of clinical guidelines. | General health
> Sexual health: other | Regulatory partnership
> Involvement with clinical guideline-setting bodies | 1,000 | National | Sometimes | 119060973871 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee. | Cancer
> Cancer: prostate | Regulatory partnership
> Involvement with clinical guideline-setting bodies | 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]. | Rare
> Phenylketonuria (PKU) | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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]. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 5,000 | National | Regularly | 119021710214 |
| Representation is usually in the hands of local sarcoma groups. We support them as required. | Cancer
> Cancer: sarcoma | Regulatory partnership
> With other healthcare advocates | 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. | Cancer
> Cancer: bladder | Regulatory partnership
> With other healthcare advocates | 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. | Cancer
> Cancer: blood | Pricing and affordability advocacy
> Engage in price-review board negotiations | 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 | Pricing and affordability advocacy
> Engage in price-review board negotiations | 100 | National | Sometimes | 119067399626 |
| For example, advocating for cost coverage of STI [Sexually Transmitted Infection] diagnostics following sexual violence. | General health
> Sexual health: other | Pricing and affordability advocacy
> Address cost barriers for low-income and vulnerable people | 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 | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Sometimes | 119067399626 |
| Adverse events and medication availability. | Bleeding
> Bleeding disorders: most types | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Infectious
> Infectious disease: other | Diagnosis and medicines delivery
> Ensure safe and effective medicine use | 1,000 | National | Regularly | 119044103374 |
| Adverse events and medication availability. | Bleeding
> Bleeding disorders: most types | Diagnosis and medicines delivery
> Ensure safe and effective medicine use | 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]. | Bleeding
> Bleeding disorders: most types | Diagnosis and medicines delivery
> Participate in developing clinical guidelines | 5,000 | National | Regularly | 119021710214 |
| For example, in the development of clinical guidelines. | General health
> Sexual health: other | Diagnosis and medicines delivery
> Participate in developing clinical guidelines | 1,000 | National | Sometimes | 119060973871 |
| Introduction of newborn screening. | Immune
> Primary immunodeficiencies | Diagnosis and medicines delivery
> Support screening and early detection | 1,000 | National | Regularly | 119078084362 |
| Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerative
> Huntington’s disease | Institutional governance
> Ensure representation within governmental advisory bodies | 5,000 | National | Regularly | 119012382661 |
| Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany. | Cancer
> Cancer: ovarian | Institutional governance
> Ensure representation within governmental advisory bodies | 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]. | Cancer
> Cancer: prostate | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119021721162 |
| Representative on the Federal Joint Committee [Gemeinsamer Bundesausschuss] for physicians and statutory health insurers. | Transplants
> Transplants: liver | Institutional governance
> Ensure representation within governmental advisory bodies | 5,000 | National | Regularly | 119035838851 |
| Representative on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Visual impairment
> Retinal diseases | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Sometimes | 119035839364 |
| Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Not Specified
> Not specified | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Sometimes | 119036152561 |
| We are a member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee]. | Neurodegenerative
> Huntington’s disease | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 119036314886 |
| A overarching role within the German statutory self-governing bodies. | Rare
> Rare disorders: genetic | Institutional governance
> Ensure representation within governmental advisory bodies | 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]. | Cancer
> Cancer: prostate | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119069535789 |
| Involvement in the EHA [European Hematology Association]. | Cancer
> Cancer: blood | Institutional governance
> Working effectively within multi-stakeholder networks | 5,000 | National | Regularly | 119036570540 |
interactions
actions & advocacy
28 mentions
