| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Patient education
> Patient information | Regulatory partnership
> Working with regulatory bodies | 10,000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Patient advocacy
> Drugs and related treatments | Regulatory partnership
> Working with regulatory bodies | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Skin
> Alopecia | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Rare
> Rare disorders: genetic | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cancer
> Cancer: brain | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Rare
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Rare diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: kidney | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Rare diseases: neurological | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromuscular
> Muscular dystrophy | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: lung | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Not Specified
> Not specified | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: brain | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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
> Tuberous sclerosis | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Cancer
> Cancer: head & neck | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurological
> Neurofibromatosis (NF) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: medical research | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Neurodegenerative
> Motor neurone diseases (MND) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Cancer
> Cancer: brain | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Rare
> Rare diseases: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Cancer
> Cancer: sarcoma | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]). | Neurodegenerative
> Parkinson’s | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Cancer
> Cancer: blood | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Disability
> Disability: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuscular
> Spinal muscular atrophy (SMA) | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Kidney
> Kidney diseases | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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]. | Patient advocacy
> Health activist | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Cancer
> Cancer: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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. | Patient advocacy
> Health activist | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 100,000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurological
> Pain | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Blood
> Blood disorders: other | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Cancer
> Cancer: bile duct | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Cancer
> Cancer: lung | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: ovarian | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 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: kidney | Regulatory partnership
> Involvement with clinical guideline-setting bodies | 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: head & neck | Regulatory partnership
> Involvement with clinical guideline-setting bodies | 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: kidney | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Skin
> Atopic dermatitis/eczema | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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
> Rare diseases: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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
> Tuberous sclerosis | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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: head & neck | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 10,000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Respiratory
> Interstitial Lung Diseases (ILDs) | Regulatory partnership
> With other healthcare advocates | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Patient advocacy
> Patient advocacy | Regulatory partnership
> With other healthcare advocates | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Cancer
> Cancer: brain | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Respiratory
> Interstitial Lung Diseases (ILDs) | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | General health
> Obesity | Impacting policy and legislation
> Influence healthcare policy and legislation | 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. | Patient education
> Patient information | Impacting policy and legislation
> Participate in public hearings and 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. | Respiratory
> Interstitial Lung Diseases (ILDs) | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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. | Patient safety
> Iatrogenic | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | 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. | Patient safety
> Iatrogenic | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 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]. | Patient education
> Patient information | Pricing and affordability advocacy
> Engage in price-review board negotiations | 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. | Patient safety
> Iatrogenic | Pricing and affordability advocacy
> Tracking and monitoring drug pricing/drug shortages | 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. | Patient safety
> Iatrogenic | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 5,000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Blood
> Thrombotic thrombocytopenia purpura (TTP) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | General health
> Obesity | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Patient safety
> Iatrogenic | Improving access pathways
> Address disparities in access and management | 5,000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | General health
> Obesity | Improving access pathways
> Address disparities in access and management | 1,000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuscular
> Spinal muscular atrophy (SMA) | Improving access pathways
> Improving access to rare/ultra-rare therapies | 5,000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Rare
> Rare disorders: genetic | Evidence-based patient input
> Use patient insights to inform decisions | 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. | Neuromuscular
> Muscular dystrophy | Evidence-based patient input
> Use patient insights to inform decisions | 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: brain | Evidence-based patient input
> Use patient insights to inform decisions | 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
> Rare diseases: neurological | Evidence-based patient input
> Leverage patient stories and lived-experience narratives | 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: kidney | Institutional governance
> Ensure representation within governmental advisory bodies | 10,000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurological
> Pain | Institutional governance
> Ensure representation within governmental advisory bodies | 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: ovarian | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Blood
> Thalassaemia | Institutional governance
> Working effectively within multi-stakeholder networks | 5,000 | National | Sometimes | 119069553871 |
| Social inclusion. | Patient advocacy
> Patient advocacy | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 100 | National | Sometimes | 119045177344 |
interactions
actions & advocacy
46 mentions
