| WHO, FDA [Food and Drug Administration], EU Drug Authorities. | Endocrine
> Thyroid conditions | Regulatory partnership
> Working with regulatory bodies | 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]. | Skin
> Angioedema | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Cancer
> Cancer: colorectal | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | No | 114997734256 |
| As an organisation involved in HTA [Health Technology Assessment] procedures conducted by ZiN [Zorginstituut Nederland – Care Institute Netherlands]. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Patient advocacy
> Patient advocacy | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Rare
> Rare disorders: genetic | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Gynaecological
> Endometriosis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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 | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Skin
> Angioedema | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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 | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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]. | Cancer
> Cancer: head & neck | Regulatory partnership
> With other healthcare advocates | 1,000 | National | Regularly | 115028445799 |
| Collaborate with ACN [Action Cancer Network], which is based in Brussels. | General health
> Diverse communities | Regulatory partnership
> With other healthcare advocates | 100 | International | Sometimes | 115049346221 |
| We work together with ACN [Cittadinanzattiva-Active Citizenship Network], as we are a small foundation. | General health
> Diverse communities | Regulatory partnership
> With other healthcare advocates | 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. | Rare
> Rare diseases: blood | Impacting policy and legislation
> Influence healthcare policy and legislation | 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.] | Rare
> Rare diseases: blood | Pricing and affordability advocacy
> Engage in price-review board negotiations | 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. | Patient advocacy
> Patient advocacy | Pricing and affordability advocacy
> Engage in price-review board negotiations | 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. | General health
> Diverse communities | Pricing and affordability advocacy
> Address cost barriers for low-income and vulnerable people | 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]. | General health
> Diverse communities | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | General health
> Diverse communities | Improving access pathways
> Advocate for wider vaccine access | 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]. | General health
> Diverse communities | Improving access pathways
> Advocate for wider vaccine access | We do not communicate with patients directly | International | Sometimes | 119069882547 |
| Introduction of a new (orphan) medicine. | Patient advocacy
> Patient advocacy | Improving access pathways
> Improving access to rare/ultra-rare therapies | 5,000 | National | Sometimes | 115029242573 |
| ERS [European Respiratory Society] EMA [European Medicines Agency] ELF [European Lung Foundation] EURORDIS [European Organisation for Rare Diseases]. | Immune
> Sarcoidosis | Institutional governance
> Working effectively within multi-stakeholder networks | 5,000 | National | Regularly | 114996748265 |
interactions
actions & advocacy
13 mentions
