| WHO, FDA [Food and Drug Administration], EU Drug Authorities. | Endocrino
> Condizioni della tiroide | Partenariato normativo
> Collaborazione con gli organismi di regolamentazione | Over 100,000 | International | Regularly | 119052227880 |
| We are regularly consulted by the Commissie Wees [Commissie Weesgeneesmiddelen – Orphan Medicinal Products Committee] as well as by the Zorginstituut [Zorginstituut Nederland – National Health Care Institute]. | Pelle
> Angioedema | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 1000 | National | Regularly | 114996612757 |
| Not regarding price — however, we do engage with the Zorginstituut [Zorginstituut Nederland – Netherlands Care Institute], for instance on matters such as the clinical necessity of medications. | Cancro
> Cancro: colorettale | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 1000 | National | No | 114997734256 |
| As an organisation involved in HTA [Health Technology Assessment] procedures conducted by ZiN [Zorginstituut Nederland – Care Institute Netherlands]. | Raro
> Malattie rare: la maggior parte dei tipi | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 100 | National | Sometimes | 115012307788 |
| We are currently engaged in discussions regarding the potential reimbursement of a medicine — the first time in 50 years that our organisation has been involved in such a process. | Difesa del paziente
> Difesa del paziente | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 100 | National | Rarely | 115028420951 |
| We are involved in discussions regarding the reimbursement of a medicine — the first time in over 50 years that we have participated in such a process. | Raro
> Malattie rare: genetiche | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 100 | National | Rarely | 115028593759 |
| On an occasional basis, we are approached by ZiN [Zorginstituut Nederland – Dutch National Health Care Institute] to provide an opinion on the introduction of medicines. | Ginecologico
> Endometriosi | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 1000 | National | Rarely | 115035834547 |
| We participate in consultations within the infectious disease working group of the HorizonScan programme of the Zorginstituut [Zorginstituut Nederland – Dutch National Health Care Institute]. | HIV
> HIV | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | 5000 | National | Sometimes | 115046925774 |
| We are regularly consulted by the Commissie Wees [Commissie Weesgeneesmiddelen – Orphan Medicinal Products Committee] as well as by the Zorginstituut [Zorginstituut Nederland – National Health Care Institute]. | Pelle
> Angioedema | Partenariato normativo
> Partecipare/facilitare riunioni con responsabili politici/regolatori | 1000 | National | Regularly | 114996612757 |
| We participate in consultations within the infectious disease working group of the HorizonScan programme of the Zorginstituut [Zorginstituut Nederland – Dutch National Health Care Institute]. | HIV
> HIV | Partenariato normativo
> Partecipare/facilitare riunioni con responsabili politici/regolatori | 5000 | National | Sometimes | 115046925774 |
| We conduct this work under the umbrella of the NFK [Nederlandse Federatie van Kankerpatiëntenorganisaties – Dutch Federation of Cancer Patient Organisations]. | Cancro
> Cancro: testa e collo | Partenariato normativo
> Con altri sostenitori della salute | 1000 | National | Regularly | 115028445799 |
| Collaborate with ACN [Action Cancer Network], which is based in Brussels. | Salute generale
> Comunità diverse | Partenariato normativo
> Con altri sostenitori della salute | 100 | International | Sometimes | 115049346221 |
| We work together with ACN [Cittadinanzattiva-Active Citizenship Network], as we are a small foundation. | Salute generale
> Comunità diverse | Partenariato normativo
> Con altri sostenitori della salute | We do not communicate with patients directly | International | Sometimes | 119069882547 |
| We are engaged in discussions with, for example, VWS [Ministerie van Volksgezondheid, Welzijn en Sport – Ministry of Health, Welfare and Sport] and pharmaceutical manufacturers with regard to medicines subject to the sluice procedure. | Raro
> Malattie rare: sangue | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 100 | National | Sometimes | 115020760936 |
| We are engaged in discussions with, for example, VWS [Ministerie van Volksgezondheid, Welzijn en Sport – Ministry of Health, Welfare and Sport] and pharmaceutical manufacturers with regard to medicines subject to the sluice procedure [expensive specialist medicines that are placed in the "geneesmiddelensluis" (medicine lock or gateway procedure) before they can be routinely reimbursed by the Dutch healthcare system. The idea is that expensive medicines do not automatically flow into the reimbursement system. They first pass through a "gate" where their value and price are evaluated.] | Raro
> Malattie rare: sangue | Advocacy per prezzi e accessibilità economica
> Partecipare alle negoziazioni del comitato di revisione dei prezzi | 100 | National | Sometimes | 115020760936 |
| We are currently engaged in discussions regarding the potential reimbursement of a medicine — the first time in 50 years that our organisation has been involved in such a process. | Difesa del paziente
> Difesa del paziente | Advocacy per prezzi e accessibilità economica
> Partecipare alle negoziazioni del comitato di revisione dei prezzi | 100 | National | Rarely | 115028420951 |
| EPECS [European Patients Empowerment for Customised Solutions] collaborates with ACN [Cittadinanzattiva-Active Citizenship Network], which is based in Brussels. Together, we address issues such as vaccination policy, the associated costs, and access for individuals in vulnerable circumstances. | Salute generale
> Comunità diverse | Advocacy per prezzi e accessibilità economica
> Affrontare le barriere di costo per le persone a basso reddito e vulnerabili | 100 | International | Sometimes | 115049346221 |
| We work together with Active Citizen Network, as we are a small foundation. Vaccination issues, access for all, ostomy issues [in the Netherlands]. | Salute generale
> Comunità diverse | Miglioramento dei percorsi di accesso
> Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria | We do not communicate with patients directly | International | Sometimes | 119069882547 |
| EPECS [European Patients Empowerment for Customised Solutions] collaborates with ACN [Cittadinanzattiva-Active Citizenship Network], which is based in Brussels. Together, we address issues such as vaccination policy, the associated costs, and access for individuals in vulnerable circumstances. | Salute generale
> Comunità diverse | Miglioramento dei percorsi di accesso
> Sostenere un accesso più ampio ai vaccini | 100 | International | Sometimes | 115049346221 |
| We work together with Active Citizen Network, as we are a small foundation. Vaccination issues, access for all, ostomy issues [in the Netherlands]. | Salute generale
> Comunità diverse | Miglioramento dei percorsi di accesso
> Sostenere un accesso più ampio ai vaccini | We do not communicate with patients directly | International | Sometimes | 119069882547 |
| Introduction of a new (orphan) medicine. | Difesa del paziente
> Difesa del paziente | Miglioramento dei percorsi di accesso
> Miglioramento dell'accesso alle terapie rare/ultra-rare | 5000 | National | Sometimes | 115029242573 |
| ERS [European Respiratory Society] EMA [European Medicines Agency] ELF [European Lung Foundation] EURORDIS [European Organisation for Rare Diseases]. | Immune
> Sarcoidosi | Governance istituzionale
> Lavorare efficacemente all'interno di reti multi-stakeholder | 5000 | National | Regularly | 114996748265 |
interazioni
azioni e advocacy
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