| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | 환자 교육
> 환자 정보 | 규제 파트너십
> 규제 기관과의 협력 | 10,000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | 환자 권익 옹호
> 약물 및 관련 치료 | 규제 파트너십
> 규제 기관과의 협력 | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | 스킨
> 탈모증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | 희귀
> 희귀 질환: 유전성 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | 암
> 암: 뇌 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 암
> 암: 혈액 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 암
> 암: 신장 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | 희귀
> 희귀 질환: 신경학적 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | 신경근
> 근이영양증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 10,000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | 암
> 암: 폐 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | 지정되지 않음
> 지정되지 않음 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 암
> 암: 뇌 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 희귀
> 결절성 경화증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | 암
> 암: 혈액 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | 암
> 암: 두경부 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 10,000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | 신경학적
> 신경섬유종증(NF) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | 암
> 암: 의학 연구 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 신경퇴행성
> 운동 신경원 질환(MND) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | 암
> 암: 뇌 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 10,000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | 희귀
> 희귀 질환: 기타 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | 암
> 암: 육종 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]). | 신경퇴행성
> 파킨슨병 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | 암
> 암: 혈액 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 장애
> 장애: 기타 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | 출혈
> 출혈 장애: 대부분의 유형 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | 신경근
> 척수성 근위축증(SMA) | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | 신장
> 신장 질환 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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]. | 환자 권익 옹호
> 건강 활동가 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | 암
> 암: 기타 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 환자 권익 옹호
> 건강 활동가 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 100,000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | 신경학적
> 통증 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | 혈액
> 혈액 장애: 기타 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 5,000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | 암
> 암: 담관 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 1,000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | 암
> 암: 폐 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | 암
> 암: 난소암 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | 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. | 암
> 암: 신장 | 규제 파트너십
> 임상 지침 설정 기관과의 관계 | 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. | 암
> 암: 두경부 | 규제 파트너십
> 임상 지침 설정 기관과의 관계 | 10,000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | 암
> 암: 신장 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 스킨
> 아토피 피부염/습진 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 희귀
> 희귀 질환: 대부분의 유형 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 희귀
> 결절성 경화증 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 암
> 암: 두경부 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 10,000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | 호흡기
> 간질성 폐질환(ILD) | 규제 파트너십
> 다른 의료 지지자들과 함께 | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | 환자 권익 옹호
> 환자 권익 옹호 | 규제 파트너십
> 다른 의료 지지자들과 함께 | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | 암
> 암: 뇌 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 호흡기
> 간질성 폐질환(ILD) | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 일반 건강
> 비만 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 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. | 환자 교육
> 환자 정보 | 정책 및 법률에 영향 미치기
> 공청회 및 협의에 참여하기 | 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. | 호흡기
> 간질성 폐질환(ILD) | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 환자 안전
> 의인성 | 정책 및 법률에 영향 미치기
> 의회 의원 및 정치 지도자 동원 | 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. | 환자 안전
> 의인성 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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]. | 환자 교육
> 환자 정보 | 가격 책정 및 affordability 옹호
> 가격 검토 위원회 협상에 참여 | 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. | 환자 안전
> 의인성 | 가격 책정 및 affordability 옹호
> 의약품 가격/의약품 부족 현황 추적 및 모니터링 | 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. | 환자 안전
> 의인성 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 5,000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | 혈액
> 혈전성 혈소판감소성 자반증(TTP) | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 1,000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | 일반 건강
> 비만 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 환자 안전
> 의인성 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 5,000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | 일반 건강
> 비만 | 접근 경로 개선
> 접근성 및 관리의 불균형 해소 | 1,000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | 신경근
> 척수성 근위축증(SMA) | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 5,000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | 희귀
> 희귀 질환: 유전성 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 신경근
> 근이영양증 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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]. | 암
> 암: 뇌 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 1,000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | 희귀
> 희귀 질환: 신경학적 | 근거 기반 환자 의견
> 환자 이야기와 실제 경험 서사 활용 | 1,000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | 암
> 암: 신장 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 10,000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | 신경학적
> 통증 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 5,000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | 암
> 암: 난소암 | 기관 거버넌스
> 정부 자문 기구 내 대표성 확보 | 100,000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | 혈액
> 지중해빈혈 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 5,000 | National | Sometimes | 119069553871 |
| Social inclusion. | 환자 권익 옹호
> 환자 권익 옹호 | 환자 권리 보호/삶의 질 향상
> 환자 경험 보호/개선 | 100 | National | Sometimes | 119045177344 |
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