| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Patiënteneducatie
> Patiëntinformatie | Regelgevend partnerschap
> Werken met regelgevende instanties | 10.000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Patiëntenbelangenbehartiging
> Drugs en gerelateerde behandelingen | Regelgevend partnerschap
> Werken met regelgevende instanties | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Huid
> Alopecia | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Kanker
> Kanker: hersenen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Regularly | 119011544745 |
| HTAs [Health Technology Assessments] by NICE [National Institute for Health and Care Excellence], SMC [Scottish Medicines Consortium], and NCPE [National Centre for Pharmacoeconomics] for MPN [Myeloproliferative Neoplasm] drugs. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | International | Rarely | 119016699229 |
| In the UK, we are involved with NICE [National Institute for Health and Care Excellence] around inputting views around these issues. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Sometimes | 119020204012 |
| NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments] for all technologies related to renal cell carcinoma, NICE kidney cancer guidelines, NICE RCC [Renal Cell Carcinoma] quality standards, NICE RCC pathways model. | Kanker
> Kanker: nier | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Zeldzaam
> Zeldzame ziekten: neurologisch | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromusculair
> Spierdystrofie | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | Kanker
> Kanker: long | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Niet opgegeven
> Niet opgegeven | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Sometimes | 119020347454 |
| Taking part in the NICE [National Institute for Health and Care Excellence] appraisal of drug vorasidenib [targeted oral cancer medication]. | Kanker
> Kanker: hersenen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Rarely | 119020588088 |
| TSA [Tuberous Sclerosis Association] works with NICE [National Institute for Health and Care Excellence], SMC [Scottish Medicines Consortium], and AWMSG [All Wales Medicines Strategy Group] to ensure patient voice is at the heart of any decision-making by regulatory bodies. | Zeldzaam
> Tubereuze sclerose | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Kanker
> Kanker: hoofd & nek | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurologisch
> Neurofibromatose (NF) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | Kanker
> Kanker: medisch onderzoek | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | We do not communicate with patients directly | International | Rarely | 119044184579 |
| Currently supporting a pharma company going through the NICE [National Institute for Health and Care Excellence] process. | Neurodegeneratief
> Motorneuronziekten (MND) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Kanker
> Kanker: hersenen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Zeldzaam
> Zeldzame ziekten: overige | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Kanker
> Kanker: sarcoom | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119051196659 |
| In the UK, the health system is very different. The charity does support reviews by NICE [National Institute for Health and Care Excellence], which decide on whether a new drug is adopted by the National Health Care System (NHS [National Health Service]). | Neurodegeneratief
> Parkinson | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 10.000 | National | Regularly | 119051367524 |
| We were involved in NICE [National Institute for Health and Care Excellence] scoping and appraisal (and an appeal) of collagenase. | Handicap
> Handicap: anders | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Bloeding
> Bloedingsstoornissen: de meeste typen | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Nier
> Nierziekten | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Over 100,000 | National | Regularly | 119064494675 |
| We respond during the consultation period of NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Patiëntenbelangenbehartiging
> Gezondheidsactivist | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Kanker
> Kanker: overig | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Sometimes | 119073770394 |
| Our organisation will respond to relevant NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments] for new, innovative medicines. We represent the patient voice during such processes. | Patiëntenbelangenbehartiging
> Gezondheidsactivist | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurologisch
> Pijn | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Bloed
> Bloedaandoeningen: overig | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 5.000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Kanker
> Kanker: galgang | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 1.000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Kanker
> Kanker: long | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Kanker
> Kanker: eierstok | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | 100.000 | National | Regularly | 119078342555 |
| NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments] for all technologies related to renal cell carcinoma, NICE kidney cancer guidelines, NICE RCC [Renal Cell Carcinoma] quality standards, NICE RCC pathways model. | Kanker
> Kanker: nier | Regelgevend partnerschap
> Betrokkenheid bij organen die klinische richtlijnen opstellen | 100.000 | National | Regularly | 119020208300 |
| Representatives participate in NIHR [National Institute for Health Research] & NICE [National Institute for Health and Care Excellence] organised meetings and committees. | Kanker
> Kanker: hoofd & nek | Regelgevend partnerschap
> Betrokkenheid bij organen die klinische richtlijnen opstellen | 10.000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Kanker
> Kanker: nier | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Regularly | 119011231734 |
| The recent NICE approval of Leo Pharma's Delgocitinib. We spoke on behalf of patients (in favour) at the Board Review. | Huid
> Atopische dermatitis/eczeem | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 5.000 | National | Regularly | 119012180050 |
| In the UK, we are involved with NICE [National Institute for Health and Care Excellence] around inputting views around these issues. | Zeldzaam
> Zeldzame ziekten: de meeste typen | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 1.000 | National | Sometimes | 119020204012 |
| TSA [Tuberous Sclerosis Association] works with NICE [National Institute for Health and Care Excellence], SMC [Scottish Medicines Consortium], and AWMSG [All Wales Medicines Strategy Group] to ensure patient voice is at the heart of any decision-making by regulatory bodies. | Zeldzaam
> Tubereuze sclerose | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 5.000 | National | Regularly | 119020927474 |
| Representatives participate in NIHR [National Institute for Health Research] & NICE [National Institute for Health and Care Excellence] organised meetings and committees. | Kanker
> Kanker: hoofd & nek | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 10.000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Respiratoir
> Interstitiële longziekten (ILD's) | Regelgevend partnerschap
> Met andere zorgadvocaten | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Patiëntenbelangenbehartiging
> Patiëntenbelangenbehartiging | Regelgevend partnerschap
> Met andere zorgadvocaten | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Kanker
> Kanker: hersenen | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100.000 | National | Regularly | 119011544745 |
| ... Work with government members of parliament [UK] campaigning for better recognition of pulmonary fibrosis, additional funding for the treatment of the disease, greater support for the patients with the disease along with their families, carers and friends. | Respiratoir
> Interstitiële longziekten (ILD's) | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100 | Local | Regularly | 119038282972 |
| Advocacy for essential medications list, access in low and middle income countries, and working with WHO on global health goals related to obesity care. | Algemene gezondheid
> Obesitas | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | International | Sometimes | 119076572106 |
| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Patiënteneducatie
> Patiëntinformatie | Beleid en wetgeving beïnvloeden
> Deelnemen aan openbare hoorzittingen en raadplegingen | 10.000 | National | Rarely | 119020374306 |
| ... Work with government members of parliament campaigning for better recognition of pulmonary fibrosis, additional funding for the treatment of the disease, greater support for the patients with the disease along with their families, carers and friends. | Respiratoir
> Interstitiële longziekten (ILD's) | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 100 | Local | Regularly | 119038282972 |
| Our parliamentary campaign involves which anti-epilepsy medications are used more in different areas and this may be due to drug pricing. | Patiëntveiligheid
> Iatrogeen | Beleid en wetgeving beïnvloeden
> Parlementariërs en politieke leiders mobiliseren | 5.000 | International | Sometimes | 119051418184 |
| Our parliamentary campaign involves which anti-epilepsy medications are used more in different areas and this may be due to drug pricing. | Patiëntveiligheid
> Iatrogeen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 5.000 | International | Sometimes | 119051418184 |
| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs The Drug Tariff is the NHS document that sets out what pharmacies and dispensing contractors are paid for medicines and medical devices. Part IX specifically covers medical appliances and chemical reagents that can be prescribed on the NHS and how they are reimbursed]. | Patiënteneducatie
> Patiëntinformatie | Pleitbezorging voor prijsstelling en betaalbaarheid
> Neem deel aan onderhandelingen met de prijsbeoordelingscommissie | 10.000 | National | Rarely | 119020374306 |
| Our parliamentary campaign involves which anti-epilepsy medications are used more in different areas and this may be due to drug pricing. | Patiëntveiligheid
> Iatrogeen | Pleitbezorging voor prijsstelling en betaalbaarheid
> Tracking en monitoring van geneesmiddelenprijzen/geneesmiddelentekorten | 5.000 | International | Sometimes | 119051418184 |
| Our parliamentary campaign involves which anti-epilepsy medications are used more in different areas and this may be due to drug pricing. | Patiëntveiligheid
> Iatrogeen | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 5.000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Bloed
> Trombotische trombocytopenische purpura (TTP) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | Algemene gezondheid
> Obesitas | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 1.000 | International | Sometimes | 119076572106 |
| Our parliamentary campaign involves which anti-epilepsy medications are used more in different areas and this may be due to drug pricing. | Patiëntveiligheid
> Iatrogeen | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 5.000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | Algemene gezondheid
> Obesitas | Toegangspaden verbeteren
> Ongelijkheden in toegang en beheer aanpakken | 1.000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromusculair
> Spinale musculaire atrofie (SMA) | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 5.000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Zeldzaam
> Zeldzame aandoeningen: genetisch | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 5.000 | International | Regularly | 119011335182 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. We ensure patients' experience and voices are heard throughout the appraisal and highlight the impact a new treatment has. | Neuromusculair
> Spierdystrofie | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 10.000 | National | Regularly | 119020240119 |
| Taking part in the NICE [National Institute for Health and Care Excellence] appraisal of drug vorasidenib [oral cancer therapy for people with gliomas]. | Kanker
> Kanker: hersenen | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 1.000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Zeldzaam
> Zeldzame ziekten: neurologisch | Op bewijs gebaseerde patiëntinbreng
> Maak gebruik van patiëntverhalen en ervaringsverhalen uit de praktijk | 1.000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Kanker
> Kanker: nier | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 10.000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurologisch
> Pijn | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 5.000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Kanker
> Kanker: eierstok | Institutioneel bestuur
> Zorg voor vertegenwoordiging binnen gouvernementele adviesorganen | 100.000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Bloed
> Thalassemie | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 5.000 | National | Sometimes | 119069553871 |
| Social inclusion. | Patiëntenbelangenbehartiging
> Patiëntenbelangenbehartiging | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | 100 | National | Sometimes | 119045177344 |
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