| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Educación del paciente
> Información del paciente | Asociación regulatoria
> Trabajando con organismos reguladores | 10.000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Defensa del paciente
> Medicamentos y tratamientos relacionados | Asociación regulatoria
> Trabajando con organismos reguladores | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Piel
> Alopecia | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Raro
> Enfermedades raras: genéticas | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cáncer
> Cáncer: cerebro | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | International | Rarely | 119016699229 |
| In the UK, we are involved with NICE [National Institute for Health and Care Excellence] around inputting views around these issues. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | 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. | Cáncer
> Cáncer: riñón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Raro
> Enfermedades raras: neurológicas | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromuscular
> Distrofia muscular | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 10.000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | Cáncer
> Cáncer: pulmón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Sin especificar
> Sin especificar | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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]. | Cáncer
> Cáncer: cerebro | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | 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. | Raro
> Esclerosis tuberosa | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Cáncer
> Cáncer: cabeza y cuello | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 10.000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurológico
> Neurofibromatosis (NF) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | Cáncer
> Cáncer: investigación médica | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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. | Neurodegenerativo
> Enfermedades de la motoneurona (EMN) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Cáncer
> Cáncer: cerebro | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 10.000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Raro
> Enfermedades raras: otras | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Cáncer
> Cáncer: sarcoma | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | 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]). | Neurodegenerativo
> Parkinson's | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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. | Discapacidad
> Discapacidad: otra | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Sangrado
> Trastornos hemorrágicos: la mayoría de los tipos | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuscular
> Atrofia muscular espinal (AME) | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Riñón
> Enfermedades renales | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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]. | Defensa del paciente
> Activista de salud | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Cáncer
> Cáncer: otro | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | 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. | Defensa del paciente
> Activista de salud | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 100.000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurológico
> Dolor | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Sangre
> Trastornos sanguíneos: otros | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 5000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Cáncer
> Cáncer: conducto biliar | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 1000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Cáncer
> Cáncer: pulmón | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Cáncer
> Cáncer: ovárico | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | 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. | Cáncer
> Cáncer: riñón | Asociación regulatoria
> Participación en organismos de elaboración de guías clínicas | 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. | Cáncer
> Cáncer: cabeza y cuello | Asociación regulatoria
> Participación en organismos de elaboración de guías clínicas | 10.000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Cáncer
> Cáncer: riñón | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 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. | Piel
> Dermatitis atópica/eccema | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | National | Regularly | 119012180050 |
| In the UK, we are involved with NICE [National Institute for Health and Care Excellence] around inputting views around these issues. | Raro
> Enfermedades raras: la mayoría de los tipos | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 1000 | 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. | Raro
> Esclerosis tuberosa | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 5000 | National | Regularly | 119020927474 |
| Representatives participate in NIHR [National Institute for Health Research] & NICE [National Institute for Health and Care Excellence] organised meetings and committees. | Cáncer
> Cáncer: cabeza y cuello | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 10.000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Respiratorio
> Enfermedades Pulmonares Intersticiales (EPI) | Asociación regulatoria
> Con otros defensores de la salud | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Defensa del paciente
> Defensa del paciente | Asociación regulatoria
> Con otros defensores de la salud | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cáncer
> Cáncer: cerebro | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 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. | Respiratorio
> Enfermedades Pulmonares Intersticiales (EPI) | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 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. | Salud general
> Obesidad | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | International | Sometimes | 119076572106 |
| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Educación del paciente
> Información del paciente | Impactando en políticas y legislación
> Participar en audiencias públicas y consultas | 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. | Respiratorio
> Enfermedades Pulmonares Intersticiales (EPI) | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 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. | Seguridad del paciente
> Iatrogénico | Impactando en políticas y legislación
> Movilizar parlamentarios y líderes políticos | 5000 | 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. | Seguridad del paciente
> Iatrogénico | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 5000 | 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]. | Educación del paciente
> Información del paciente | Defensa de precios y asequibilidad
> Participar en negociaciones con el comité de revisión de precios | 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. | Seguridad del paciente
> Iatrogénico | Defensa de precios y asequibilidad
> Seguimiento y monitorización de precios de medicamentos/escasez de medicamentos | 5000 | 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. | Seguridad del paciente
> Iatrogénico | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 5000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Sangre
> Púrpura trombocitopénica trombótica (PTT) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | Salud general
> Obesidad | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención sanitaria | 1000 | 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. | Seguridad del paciente
> Iatrogénico | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 5000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | Salud general
> Obesidad | Mejora de las vías de acceso
> Abordar las disparidades en el acceso y la gestión | 1000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuscular
> Atrofia muscular espinal (AME) | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 5000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Raro
> Enfermedades raras: genéticas | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 5000 | 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. | Neuromuscular
> Distrofia muscular | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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]. | Cáncer
> Cáncer: cerebro | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 1000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Raro
> Enfermedades raras: neurológicas | Aportaciones del paciente basadas en evidencia
> Aprovechar las historias de pacientes y los relatos de experiencias vividas | 1000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Cáncer
> Cáncer: riñón | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 10.000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurológico
> Dolor | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 5000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Cáncer
> Cáncer: ovárico | Gobernanza institucional
> Garantizar la representación en los órganos consultivos gubernamentales | 100.000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Sangre
> Talasemia | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 5000 | National | Sometimes | 119069553871 |
| Social inclusion. | Defensa del paciente
> Defensa del paciente | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | 100 | National | Sometimes | 119045177344 |
interacciones
acciones y defensa
46 menciones
