| HAS [Haute Autorité de Santé – French National Authority for Health] contribution. | Rheumatic
> Axial spondyloarthritis | Regulatory partnership
> Working with regulatory bodies | 1,000 | National | Sometimes | 114996619378 |
| Patient contribution to the HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: blood | Regulatory partnership
> Working with regulatory bodies | 100 | National | Sometimes | 114997550596 |
| Contributions during the evaluation of a new treatment. | Cancer
> Cancer: rare | Regulatory partnership
> Working with regulatory bodies | 1,000 | National | Rarely | 115021537282 |
| Submissions to the HAS [Haute Autorité de Santé – French National Authority for Health] and exchanges with the ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products]. | Rare
> Rare diseases: respiratory | Regulatory partnership
> Working with regulatory bodies | 1,000 | National | Regularly | 115037393435 |
| Engagement with HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: blood | Regulatory partnership
> Working with regulatory bodies | 100,000 | National | Regularly | 115058165499 |
| ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products], the European Commission. | Rare
> Rare diseases: metabolic/lysosomal | Regulatory partnership
> Working with regulatory bodies | 5,000 | National | Sometimes | 119024758732 |
| Contributions submitted to the HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Regularly | 114996624570 |
| ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products] sets the reimbursement rates for medicines. | Neurological
> Neurological: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 114996998287 |
| HAS [Haute Autorité de Santé – French National Authority for Health] consultations. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 114997498340 |
| ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for Medicines and Health Products Safety], HAS [Haute Autorité de Santé – French National Authority for Health]. | Neurodegenerative
> Parkinson’s | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Sometimes | 115006691512 |
| HAS [Haute Autorité de Santé – French National Authority for Health] dossier submission for reimbursement. | Rare
> Rare disorders: genetic | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100 | National | Sometimes | 115007035544 |
| Our national organisation is frequently consulted by the HAS [Haute Autorité de Santé – French National Authority for Health] and the CEPS [Comité Économique des Produits de Santé – Economic Committee for Health Products]. At the regional level, we contribute through concrete examples. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | Regional | Rarely | 115019695255 |
| HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: lung | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100 | National | Sometimes | 115023193878 |
| HAS [Haute Autorité de Santé – French National Authority for Health]. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Regularly | 115028340764 |
| Submissions to the HAS [Haute Autorité de Santé – French National Authority for Health] and exchanges with the ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products]. | Rare
> Rare diseases: respiratory | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Regularly | 115037393435 |
| HAS [Haute Autorité de Santé – French National Authority for Health], ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products], DGOS [Direction générale de l'offre de soins – Directorate General for Health Care Provision]. | Rare
> Rare diseases: anaemias | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Regularly | 115051867960 |
| Engagement with HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Regularly | 115058165499 |
| HAS [Haute Autorité de Santé – French National Authority for Health], contributions to the AMM [autorisation de mise sur le marché – marketing authorisation] processes for new medicines. | Bleeding
> Bleeding disorders: other | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 1,000 | National | Regularly | 114998547552 |
| Opinions on new medicines prior to AMM [Autorisation de Mise sur le Marché – Marketing Authorisation]. | Patient safety
> Iatrogenic | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 1,000 | National | Regularly | 115006692431 |
| HAS [Haute Autorité de Santé – French National Authority for Health] contributions in support of AMM [Autorisation de Mise sur le Marché – Marketing Authorisation] applications. | Neuromuscular
> Myasthenia gravis | Regulatory partnership
> Contribute to Marketing Authorisation submissions | Do not know | International | Regularly | 115019651354 |
| Apprenticeship programme at the ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products], contributing to the evaluation of medicinal products. | Endocrine
> Growth disorders | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 1,000 | International | Regularly | 115043122988 |
| Participation in fast-track designations for clinical trials, inclusion of adolescents, the Biotech Act, and related initiatives. | Cancer
> Cancer: children’s / young people’s | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 1,000 | International | Regularly | 115053274069 |
| ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products]. | Cardiovascular
> Cardiovascular: most types | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 1,000 | National | Regularly | 115057828483 |
| Our national organisation is frequently consulted by the HAS [Haute Autorité de Santé – French National Authority for Health] and the CEPS [Comité Économique des Produits de Santé – Economic Committee for Health Products]. At the regional level, we contribute through concrete examples. | Rare
> Rare diseases: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 1,000 | Regional | Rarely | 115019695255 |
| Consultation with the Ministry of Health. | Cancer
> Cancer: breast | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 10,000 | National | Rarely | 115037385316 |
| Apprenticeship programme at the ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products], contributing to the evaluation of medicinal products. | Endocrine
> Growth disorders | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 1,000 | International | Regularly | 115043122988 |
| Engagement with members of parliament, the Ministry of Health, and the HAS [Haute Autorité de Santé – French National Authority for Health]; advocacy efforts to remove genomic tests from the RIHN [Référentiel des actes Innovants Hors Nomenclature – Reference Framework for Innovative Acts Outside the Nomenclature]; presentations at congresses and seminars; and chairing of symposia. | Cancer
> Cancer: breast | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 10,000 | National | Regularly | 115049335124 |
| Participation in fast-track designations for clinical trials, inclusion of adolescents, the Biotech Act [at EU level], and related initiatives. | Cancer
> Cancer: children’s / young people’s | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | International | Regularly | 115053274069 |
| Engagement with members of parliament, the Ministry of Health, and the HAS [Haute Autorité de Santé – French National Authority for Health]; advocacy efforts to remove genomic tests from the RIHN [Référentiel des actes Innovants Hors Nomenclature – Reference Framework for Innovative Acts Outside the Nomenclature]; presentations at congresses and seminars; and chairing of symposia. | Cancer
> Cancer: breast | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 10,000 | National | Regularly | 115049335124 |
| Regarding the reimbursement of growth hormone in 2012. | Rare
> Rare disorders: genetic | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 100 | National | Sometimes | 114999124203 |
| Legislation on patient out-of-pocket costs. | Cancer
> Cancer: breast | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 1,000 | National | Regularly | 115028639358 |
| ANSM [Agence nationale de sécurité du médicament et des produits de santé – National Agency for the Safety of Medicines and Health Products] sets the reimbursement rates for medicines. | Neurological
> Neurological: other | Pricing and affordability advocacy
> Engage in price-review board negotiations | 1,000 | National | Sometimes | 114996998287 |
| Legislation on patient out-of-pocket costs. | Cancer
> Cancer: breast | Pricing and affordability advocacy
> Address cost barriers for low-income and vulnerable people | 1,000 | National | Regularly | 115028639358 |
| Reimbursement of growth hormone. | General health
> General health | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Sometimes | 114996944911 |
| Regarding the reimbursement of growth hormone in 2012. | Rare
> Rare disorders: genetic | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Sometimes | 114999124203 |
| Advocacy efforts to remove genomic tests from the RIHN [Référentiel des actes Innovants Hors Nomenclature – Reference Framework for Innovative Acts Outside the Nomenclature] [The issue centers on genomic signature tests used in early-stage hormone receptor–positive, HER2-negative breast cancer, to determine whether adjuvant chemotherapy is likely to provide meaningful benefit. The logic is that this should allow many women to avoid unnecessary chemotherapy. However, the French breast-cancer patient groups argue that under the RIHN scheme elligible patients find it difficult to access the genomic tests. They want the genomic tests to be made available through the general social-security system.] | Cancer
> Cancer: breast | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 10,000 | National | Regularly | 115049335124 |
| Correspondence submitted to request reimbursement of a specific voice prosthesis. | Disability
> Disability: other | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | National | Rarely | 115012114375 |
| Hybrid closed-loop systems, new CGM [Continuous Glucose Monitoring] devices. | Endocrine
> Diabetes (both types 1 and 2) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | Regional | Regularly | 115028487590 |
| The HAS [Haute Autorité de Santé – French National Authority for Health] should facilitate access to innovative medicines that hold a temporary authorisation. | Cancer
> Cancer: blood | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | National | Regularly | 115051136978 |
| Patient advisory council for scientific studies. | General health
> Obesity | Evidence-based patient input
> Use patient insights to inform decisions | 1,000 | International | Regularly | 115028400081 |
| Patient contributions to the HAS [Haute Autorité de Santé – French National Authority for Health]. | Cancer
> Cancer: blood | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 100 | National | Sometimes | 114997550596 |
| Our national organisation is frequently consulted by the HAS [Haute Autorité de Santé – French National Authority for Health] and the CEPS [Comité Économique des Produits de Santé – Economic Committee for Health Products]. At the regional level, we contribute through concrete examples. | Rare
> Rare diseases: most types | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 1,000 | Regional | Rarely | 115019695255 |
| Clinical trials, opinion videos. | Endocrine
> Diabetes (both types 1 and 2) | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 100,000 | National | Sometimes | 115049743006 |
| Patient rights and contributing our experience as patients. | Cardiovascular
> Cardiovascular: most types | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 100 | Regional | Regularly | 115060504774 |
| Questionnaire for input from patient and user associations. | Cardiovascular
> Familial hypercholesterolaemia (FH) | Evidence-based patient input
> Conduct surveys/research to generate data | 1,000 | National | Sometimes | 115053041303 |
| Patient advisory council for scientific studies. | General health
> Obesity | Diagnosis and medicines delivery
> Collaborate on clinical trial design | 1,000 | International | Regularly | 115028400081 |
| Clinical trials. | Endocrine
> Diabetes (both types 1 and 2) | Diagnosis and medicines delivery
> Collaborate on clinical trial design | 100,000 | National | Sometimes | 115049743006 |
| Participation in fast-track designations for clinical trials, inclusion of adolescents, the Biotech Act, and related initiatives. | Cancer
> Cancer: children’s / young people’s | Diagnosis and medicines delivery
> Collaborate on clinical trial design | 1,000 | International | Regularly | 115053274069 |
| The Fédération Française des Groupements de Parkinsoniens [French Federation of Parkinson's Patient Groups] represents Parkinson's patients in health governance bodies and ministerial forums. | Neurodegenerative
> Parkinson’s | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | National | Regularly | 114997021296 |
| ANRS [Agence nationale de recherches sur le sida et les hépatites virales – National Agency for Research on AIDS and Viral Hepatitis], Coress [Coordination régionale en santé sexuelle - Regional Coordination for Sexual Health]. | HIV
> HIV and hepatitis | Institutional governance
> Working effectively within multi-stakeholder networks | 1,000 | National | Regularly | 115035724756 |
| Advocacy, discrimination. | Rheumatic
> Psoriasis and psoriatic arthritis | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 100,000 | National | Regularly | 115042996062 |
| Patient rights and contributing our experience as patients. | Cardiovascular
> Cardiovascular: most types | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 100 | Regional | Regularly | 115060504774 |
interactions
actions & advocacy
27 mentions
