| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | 病人教育
> 患者資料 | 監管合作夥伴關係
> 與監管機構合作 | 10,000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | 患者倡議
> 藥物及相關治療 | 監管合作夥伴關係
> 與監管機構合作 | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | 皮膚
> 脫髮 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | 罕見
> 罕見疾病：遺傳性 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | 癌症
> 癌症：腦部 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 癌症
> 癌症：血液 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | 罕見
> 罕見疾病：大多數類型 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 罕見
> 罕見疾病：大多數類型 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 癌症
> 癌症：腎臟 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 100,000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | 罕見
> 罕見疾病：神經系統 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 1,000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | 神經肌肉
> 肌肉萎縮症 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 10,000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | 癌症
> 癌症：肺 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 1,000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | 未指定
> 未指定 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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]. | 癌症
> 癌症：腦部 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 罕見
> 結節性硬化症 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | 癌症
> 癌症：血液 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | 癌症
> 癌症：頭頸部 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 10,000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | 神經系統
> 神經纖維瘤病（NF） | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 100,000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | 癌症
> 癌症：醫學研究 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 神經退行性
> 運動神經元疾病（MND） | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | 癌症
> 癌症：腦部 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 10,000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | 罕見
> 罕見疾病：其他 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 1,000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | 癌症
> 癌症：肉瘤 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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]). | 神經退行性
> 柏金遜症 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 100,000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | 癌症
> 癌症：血液 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 殘疾
> 殘疾：其他 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | 出血
> 出血性疾病：大多數類型 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 1,000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | 神經肌肉
> 脊髓性肌肉萎縮症（SMA） | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | 腎臟
> 腎臟疾病 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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]. | 患者倡議
> 健康活動人士 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 100,000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | 癌症
> 癌症：其他 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 患者倡議
> 健康活動人士 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 100,000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | 神經系統
> 疼痛 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | 血液
> 血液疾病：其他 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 5,000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | 癌症
> 癌症：膽管 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 1,000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | 癌症
> 癌症：肺 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | 癌症
> 癌症：卵巢癌 | 監管合作夥伴關係
> 參與健康技術評估（HTA）及報銷審查 | 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. | 癌症
> 癌症：腎臟 | 監管合作夥伴關係
> 參與臨床指引制定機構 | 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. | 癌症
> 癌症：頭頸部 | 監管合作夥伴關係
> 參與臨床指引制定機構 | 10,000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | 癌症
> 癌症：腎臟 | 監管合作夥伴關係
> 出席/主持與政策制定者/監管機構的會議 | 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. | 皮膚
> 異位性皮膚炎／濕疹 | 監管合作夥伴關係
> 出席/主持與政策制定者/監管機構的會議 | 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. | 罕見
> 罕見疾病：大多數類型 | 監管合作夥伴關係
> 出席/主持與政策制定者/監管機構的會議 | 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. | 罕見
> 結節性硬化症 | 監管合作夥伴關係
> 出席/主持與政策制定者/監管機構的會議 | 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. | 癌症
> 癌症：頭頸部 | 監管合作夥伴關係
> 出席/主持與政策制定者/監管機構的會議 | 10,000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | 呼吸系統
> 間質性肺病（ILDs） | 監管合作夥伴關係
> 與其他醫療倡導者 | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | 患者倡議
> 患者倡議 | 監管合作夥伴關係
> 與其他醫療倡導者 | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | 癌症
> 癌症：腦部 | 影響政策及立法
> 影響醫療保健政策及立法 | 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. | 呼吸系統
> 間質性肺病（ILDs） | 影響政策及立法
> 影響醫療保健政策及立法 | 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. | 一般健康
> 肥胖症 | 影響政策及立法
> 影響醫療保健政策及立法 | 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. | 病人教育
> 患者資料 | 影響政策及立法
> 參與公眾聆訊及諮詢 | 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. | 呼吸系統
> 間質性肺病（ILDs） | 影響政策及立法
> 動員議員及政治領袖 | 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. | 病人安全
> 醫源性 | 影響政策及立法
> 動員議員及政治領袖 | 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. | 病人安全
> 醫源性 | 定價及可負擔性倡議
> 倡導公平藥品定價 | 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]. | 病人教育
> 患者資料 | 定價及可負擔性倡議
> 參與價格審查委員會談判 | 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. | 病人安全
> 醫源性 | 定價及可負擔性倡議
> 追蹤及監測藥品定價／藥品短缺情況 | 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. | 病人安全
> 醫源性 | 改善存取途徑
> 促進公平獲取藥物／醫療保健 | 5,000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | 血液
> 血栓性血小板減少性紫癜（TTP） | 改善存取途徑
> 促進公平獲取藥物／醫療保健 | 1,000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | 一般健康
> 肥胖症 | 改善存取途徑
> 促進公平獲取藥物／醫療保健 | 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. | 病人安全
> 醫源性 | 改善存取途徑
> 解決在獲取和管理方面的差距 | 5,000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | 一般健康
> 肥胖症 | 改善存取途徑
> 解決在獲取和管理方面的差距 | 1,000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | 神經肌肉
> 脊髓性肌肉萎縮症（SMA） | 改善存取途徑
> 改善罕見/極罕見療法的獲取途徑 | 5,000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | 罕見
> 罕見疾病：遺傳性 | 以實證為基礎的患者意見
> 利用患者洞察來輔助決策 | 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. | 神經肌肉
> 肌肉萎縮症 | 以實證為基礎的患者意見
> 利用患者洞察來輔助決策 | 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]. | 癌症
> 癌症：腦部 | 以實證為基礎的患者意見
> 利用患者洞察來輔助決策 | 1,000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | 罕見
> 罕見疾病：神經系統 | 以實證為基礎的患者意見
> 善用患者故事及親身經歷敘述 | 1,000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | 癌症
> 癌症：腎臟 | 機構管治
> 確保在政府諮詢機構中獲得代表席位 | 10,000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | 神經系統
> 疼痛 | 機構管治
> 確保在政府諮詢機構中獲得代表席位 | 5,000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | 癌症
> 癌症：卵巢癌 | 機構管治
> 確保在政府諮詢機構中獲得代表席位 | 100,000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | 血液
> 地中海貧血症 | 機構管治
> 在多方持份者網絡中有效運作 | 5,000 | National | Sometimes | 119069553871 |
| Social inclusion. | 患者倡議
> 患者倡議 | 維護病人權益／提升生活質素
> 保護/改善患者體驗 | 100 | National | Sometimes | 119045177344 |
互動
行動與倡議
46 提及
