| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Éducation du patient
> Informations sur le patient | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 10 000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Défense des droits des patients
> Médicaments et traitements associés | Partenariat réglementaire
> Travailler avec les organismes de réglementation | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Peau
> Alopécie | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Rare
> Maladies rares : génétiques | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cancer
> Cancer : cerveau | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Cancer
> Cancer : sang | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Cancer
> Cancer : rein | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 100 000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Rare
> Maladies rares : neurologiques | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromusculaire
> Dystrophie musculaire | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 10 000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | Cancer
> Cancer : poumon | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Non spécifié
> Non spécifié | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Cancer
> Cancer : cerveau | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Rare
> Sclérose tubéreuse | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Cancer
> Cancer : sang | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Cancer
> Cancer : tête & cou | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 10 000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurologique
> Neurofibromatose (NF) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 100 000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | Cancer
> Cancer : recherche médicale | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Neurodégénératif
> Maladies du motoneurone (MND) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Cancer
> Cancer : cerveau | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 10 000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Rare
> Maladies rares : autres | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Cancer
> Cancer : sarcome | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]). | Neurodégénératif
> Parkinson | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 100 000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Cancer
> Cancer : sang | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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 : autre | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Saignement
> Troubles hémorragiques : la plupart des types | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromusculaire
> Amyotrophie spinale (SMA) | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Rein
> Maladies rénales | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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]. | Défense des droits des patients
> Militant pour la santé | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 100 000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Cancer
> Cancer : autre | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Défense des droits des patients
> Militant pour la santé | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 100 000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurologique
> Douleur | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Sang
> Troubles sanguins : autres | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 5 000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Cancer
> Cancer : voies biliaires | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 1 000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Cancer
> Cancer : poumon | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Cancer
> Cancer : ovarien | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | 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. | Cancer
> Cancer : rein | Partenariat réglementaire
> Implication dans les organismes d'élaboration de directives cliniques | 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. | Cancer
> Cancer : tête & cou | Partenariat réglementaire
> Implication dans les organismes d'élaboration de directives cliniques | 10 000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Cancer
> Cancer : rein | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Peau
> Dermatite atopique/eczéma | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Rare
> Maladies rares : la plupart des types | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Rare
> Sclérose tubéreuse | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Cancer
> Cancer : tête & cou | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 10 000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Respiratoire
> Pneumopathies interstitielles diffuses (PID) | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Défense des droits des patients
> Défense des droits des patients | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cancer
> Cancer : cerveau | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Respiratoire
> Pneumopathies interstitielles diffuses (PID) | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Santé générale
> Obésité | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 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. | Éducation du patient
> Informations sur le patient | Influencer les politiques et la législation
> Participer aux audiences publiques et aux consultations | 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. | Respiratoire
> Pneumopathies interstitielles diffuses (PID) | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Sécurité des patients
> Iatrogène | Influencer les politiques et la législation
> Mobiliser les parlementaires et les dirigeants politiques | 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. | Sécurité des patients
> Iatrogène | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 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]. | Éducation du patient
> Informations sur le patient | Plaidoyer pour la tarification et l'accessibilité financière
> Participer aux négociations du comité d'examen des prix | 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. | Sécurité des patients
> Iatrogène | Plaidoyer pour la tarification et l'accessibilité financière
> Suivi et surveillance des prix des médicaments/pénuries de médicaments | 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. | Sécurité des patients
> Iatrogène | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 5 000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Sang
> Purpura thrombotique thrombocytopénique (PTT) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 1 000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | Santé générale
> Obésité | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Sécurité des patients
> Iatrogène | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 5 000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | Santé générale
> Obésité | Amélioration des voies d'accès
> Remédier aux disparités en matière d'accès et de gestion | 1 000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromusculaire
> Amyotrophie spinale (SMA) | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 5 000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Rare
> Maladies rares : génétiques | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Neuromusculaire
> Dystrophie musculaire | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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]. | Cancer
> Cancer : cerveau | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 1 000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Rare
> Maladies rares : neurologiques | Contribution des patients fondée sur des données probantes
> Exploiter les témoignages de patients et les récits d'expériences vécues | 1 000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Cancer
> Cancer : rein | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 10 000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurologique
> Douleur | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 5 000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Cancer
> Cancer : ovarien | Gouvernance institutionnelle
> Assurer la représentation au sein des organes consultatifs gouvernementaux | 100 000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Sang
> Thalassémie | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 5 000 | National | Sometimes | 119069553871 |
| Social inclusion. | Défense des droits des patients
> Défense des droits des patients | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | 100 | National | Sometimes | 119045177344 |
interactions
actions et plaidoyer
46 mentions
