| WHO, FDA [Food and Drug Administration], EU Drug Authorities. | Endokrin
> Schilddrüsenerkrankungen | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 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]. | Haut
> Angioödem | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | 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. | Krebs
> Krebs: Kolorektal | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | No | 114997734256 |
| As an organisation involved in HTA [Health Technology Assessment] procedures conducted by ZiN [Zorginstituut Nederland – Care Institute Netherlands]. | Selten
> Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Patientenvertretung
> Patientenvertretung | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Selten
> Seltene Erkrankungen: genetisch | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Gynäkologisch
> Endometriose | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | 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 | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | 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]. | Haut
> Angioödem | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 1.000 | 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 | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 5.000 | National | Sometimes | 115046925774 |
| We conduct this work under the umbrella of the NFK [Nederlandse Federatie van Kankerpatiëntenorganisaties – Dutch Federation of Cancer Patient Organisations]. | Krebs
> Krebs: Kopf & Hals | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 1.000 | National | Regularly | 115028445799 |
| Collaborate with ACN [Action Cancer Network], which is based in Brussels. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 100 | International | Sometimes | 115049346221 |
| We work together with ACN [Cittadinanzattiva-Active Citizenship Network], as we are a small foundation. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 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. | Selten
> Seltene Krankheiten: Blut | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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.] | Selten
> Seltene Krankheiten: Blut | Preisgestaltung und Erschwinglichkeitsförderung
> An Preisüberprüfungsausschuss-Verhandlungen teilnehmen | 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. | Patientenvertretung
> Patientenvertretung | Preisgestaltung und Erschwinglichkeitsförderung
> An Preisüberprüfungsausschuss-Verhandlungen teilnehmen | 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. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Preisgestaltung und Erschwinglichkeitsförderung
> Kostenhürden für einkommensschwache und vulnerable Personen abbauen | 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]. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Verbesserung der Zugangswege
> Für einen breiteren Impfstoffzugang eintreten | 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]. | Allgemeine Gesundheit
> Vielfältige Gemeinschaften | Verbesserung der Zugangswege
> Für einen breiteren Impfstoffzugang eintreten | We do not communicate with patients directly | International | Sometimes | 119069882547 |
| Introduction of a new (orphan) medicine. | Patientenvertretung
> Patientenvertretung | Verbesserung der Zugangswege
> Verbesserung des Zugangs zu seltenen/extrem seltenen Therapien | 5.000 | National | Sometimes | 115029242573 |
| ERS [European Respiratory Society] EMA [European Medicines Agency] ELF [European Lung Foundation] EURORDIS [European Organisation for Rare Diseases]. | Immun
> Sarkoidose | Institutionelle Governance
> Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 5.000 | National | Regularly | 114996748265 |
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