| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Patientenaufklärung
> Patienteninformationen | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 10.000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Patientenvertretung
> Medikamente und verwandte Behandlungen | Regulatorische Partnerschaft
> Zusammenarbeit mit Regulierungsbehörden | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Haut
> Alopezie | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Selten
> Seltene Erkrankungen: genetisch | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Krebs
> Krebs: Gehirn | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Krebs
> Krebs: Blut | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Selten
> Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Selten
> Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Krebs
> Krebs: Niere | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Selten
> Seltene Krankheiten: neurologisch | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromuskulär
> Muskeldystrophie | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | Krebs
> Krebs: Lunge | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Nicht angegeben
> Nicht angegeben | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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]. | Krebs
> Krebs: Gehirn | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Selten
> Tuberöse Sklerose | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Krebs
> Krebs: Blut | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Krebs
> Krebs: Kopf & Hals | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurologisch
> Neurofibromatose (NF) | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | Krebs
> Krebs: medizinische Forschung | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Neurodegenerativ
> Motoneuronerkrankungen (MND) | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Krebs
> Krebs: Gehirn | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 10.000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Selten
> Seltene Krankheiten: andere | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Krebs
> Krebs: Sarkom | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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]). | Neurodegenerativ
> Parkinson | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Krebs
> Krebs: Blut | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Behinderung
> Behinderung: sonstige | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Blutung
> Blutungserkrankungen: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuskulär
> Spinale Muskelatrophie (SMA) | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Niere
> Nierenerkrankungen | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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]. | Patientenvertretung
> Gesundheitsaktivistin | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Krebs
> Krebs: andere | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Patientenvertretung
> Gesundheitsaktivistin | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 100.000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurologisch
> Schmerz | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Blut
> Blutkrankheiten: andere | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 5.000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Krebs
> Krebs: Gallengang | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 1.000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Krebs
> Krebs: Lunge | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Krebs
> Krebs: Eierstock | Regulatorische Partnerschaft
> Teilnahme an Health Technology Assessment (HTA) und Erstattungsprüfungen | 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. | Krebs
> Krebs: Niere | Regulatorische Partnerschaft
> Beteiligung an Gremien zur Erstellung klinischer Leitlinien | 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. | Krebs
> Krebs: Kopf & Hals | Regulatorische Partnerschaft
> Beteiligung an Gremien zur Erstellung klinischer Leitlinien | 10.000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Krebs
> Krebs: Niere | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Haut
> Atopische Dermatitis/Ekzem | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Selten
> Seltene Krankheiten: die meisten Typen | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Selten
> Tuberöse Sklerose | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 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. | Krebs
> Krebs: Kopf & Hals | Regulatorische Partnerschaft
> Teilnahme an/Durchführung von Treffen mit politischen Entscheidungsträgern/Regulierungsbehörden | 10.000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Atemwege
> Interstitielle Lungenerkrankungen (ILDs) | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Patientenvertretung
> Patientenvertretung | Regulatorische Partnerschaft
> Mit anderen Gesundheitsfürsprechern | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Krebs
> Krebs: Gehirn | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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. | Atemwege
> Interstitielle Lungenerkrankungen (ILDs) | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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. | Allgemeine Gesundheit
> Fettleibigkeit | Einfluss auf Politik und Gesetzgebung
> Gesundheitspolitik und Gesetzgebung beeinflussen | 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. | Patientenaufklärung
> Patienteninformationen | Einfluss auf Politik und Gesetzgebung
> An öffentlichen Anhörungen und Konsultationen teilnehmen | 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. | Atemwege
> Interstitielle Lungenerkrankungen (ILDs) | Einfluss auf Politik und Gesetzgebung
> Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 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. | Patientensicherheit
> Iatrogen | Einfluss auf Politik und Gesetzgebung
> Parlamentarier und politische Führungspersönlichkeiten mobilisieren | 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. | Patientensicherheit
> Iatrogen | Preisgestaltung und Erschwinglichkeitsförderung
> Für faire Medikamentenpreise eintreten | 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]. | Patientenaufklärung
> Patienteninformationen | Preisgestaltung und Erschwinglichkeitsförderung
> An Preisüberprüfungsausschuss-Verhandlungen teilnehmen | 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. | Patientensicherheit
> Iatrogen | Preisgestaltung und Erschwinglichkeitsförderung
> Verfolgung und Überwachung von Arzneimittelpreisen/Arzneimittelengpässen | 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. | Patientensicherheit
> Iatrogen | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 5.000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Blut
> Thrombotisch-thrombozytopenische Purpura (TTP) | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 1.000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | Allgemeine Gesundheit
> Fettleibigkeit | Verbesserung der Zugangswege
> Gleichberechtigten Zugang zu Medikamenten/Gesundheitsversorgung fördern | 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. | Patientensicherheit
> Iatrogen | Verbesserung der Zugangswege
> Ungleichheiten beim Zugang und bei der Verwaltung beseitigen | 5.000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | Allgemeine Gesundheit
> Fettleibigkeit | Verbesserung der Zugangswege
> Ungleichheiten beim Zugang und bei der Verwaltung beseitigen | 1.000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuskulär
> Spinale Muskelatrophie (SMA) | Verbesserung der Zugangswege
> Verbesserung des Zugangs zu seltenen/extrem seltenen Therapien | 5.000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Selten
> Seltene Erkrankungen: genetisch | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 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. | Neuromuskulär
> Muskeldystrophie | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 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]. | Krebs
> Krebs: Gehirn | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patienteneinblicke, um Entscheidungen zu treffen | 1.000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Selten
> Seltene Krankheiten: neurologisch | Evidenzbasierter Patientenbeitrag
> Nutzen Sie Patientengeschichten und Erfahrungsberichte aus erster Hand | 1.000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Krebs
> Krebs: Niere | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 10.000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurologisch
> Schmerz | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 5.000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Krebs
> Krebs: Eierstock | Institutionelle Governance
> Sicherstellen der Vertretung in staatlichen Beratungsgremien | 100.000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Blut
> Thalassämie | Institutionelle Governance
> Effektiv in Netzwerken mit mehreren Interessengruppen arbeiten | 5.000 | National | Sometimes | 119069553871 |
| Social inclusion. | Patientenvertretung
> Patientenvertretung | Patientenrechte wahren/Lebensqualität verbessern
> Schutz/Verbesserung der Patientenerfahrung | 100 | National | Sometimes | 119045177344 |
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