| We have been involved in a number of steering groups representing patient interests on things like Part IX drug tariffs. | Patientuddannelse
> Patientoplysninger | Regulatorisk partnerskab
> Arbejde med regulerende myndigheder | 10.000 | National | Rarely | 119020374306 |
| Scottish Medicine Committee. | Patientadvokatur
> Lægemidler og relaterede behandlinger | Regulatorisk partnerskab
> Arbejde med regulerende myndigheder | 100 | National | Sometimes | 119058695466 |
| At NICE [National Institute for Health and Care Excellence], for new drugs, which are few and far between. | Hud
> Alopeci | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Sometimes | 119011239403 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Sjælden
> Sjældne sygdomme: genetisk | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | International | Regularly | 119011335182 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Kræft
> Kræft: hjerne | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119012976905 |
| NICE [National Institute for Health and Care Excellence] HST [Highly Specialised Technologies] Approvals. | Sjælden
> Sjældne sygdomme: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Sjælden
> Sjældne sygdomme: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Kræft
> Kræft: nyre | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100.000 | National | Regularly | 119020208300 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Sjælden
> Sjældne sygdomme: neurologiske | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Rarely | 119020208461 |
| We are regularly involved in NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium] appraisals. | Neuromuskulær
> Muskeldystrofi | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Regularly | 119020240119 |
| We have sent statements to NICE [National Institute for Health and Care Excellence] during several new treatments submissions/appraisals. | Kræft
> Kræft: lunge | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Sometimes | 119020270255 |
| We contribute to technology appraisals undertaken by the UK regulator NICE [National Institute for Health and Care Excellence]. | Ikke angivet
> Ikke angivet | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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]. | Kræft
> Kræft: hjerne | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Sjælden
> Tuberøs sklerose | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119020927474 |
| We accept all invitations to participate in HTAs [Health Technology Assessments] as a stakeholder. | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119023725459 |
| NICE [National Institute for Health and Care Excellence]. | Kræft
> Cancer: hoved & hals | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | International | Regularly | 119035824669 |
| We input to NICE [National Institute for Health and Care Excellence] as a stakeholder. | Neurologisk
> Neurofibromatose (NF) | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100.000 | National | Sometimes | 119035847489 |
| NICE [National Institute for Health and Care Excellence] and NHSE's [National Health Service England's] commissioning bodies. | Kræft
> Kræft: medicinsk forskning | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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
> Motorneuronesygdomme (MND) | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Rarely | 119044293510 |
| NICE [National Institute for Health and Care Excellence] and Optune - TTF [Tumour Treating Fields]. | Kræft
> Kræft: hjerne | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 10.000 | National | Sometimes | 119051192063 |
| To NICE [National Institute for Health and Care Excellence] regarding metreleptin. | Sjælden
> Sjældne sygdomme: andre | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Rarely | 119051196563 |
| NICE [National Institute for Health and Care Excellence] drug appraisals and SMC [Scottish Medicines Consortium], etc. | Kræft
> Kræft: sarkom | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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
> Parkinsons | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100.000 | National | Rarely | 119051328349 |
| We input to NICE [National Institute for Health and Care Excellence] and HTA [Health Technology Assessment] work. | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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: andet | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | Not specified | National | Rarely | 119051586905 |
| NICE [National Institute for Health and Care Excellence] Technology appraisal committee submissions. | Blødning
> Blødningsforstyrrelser: de fleste typer | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Regularly | 119059132955 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuskulær
> Spinal muskelatrofi (SMA) | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Regularly | 119059238135 |
| Supporting Patient representatives at HTA [Health Technology Assessment]. | Nyre
> Nyresygdomme | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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]. | Patientadvokatur
> Sundhedsaktivist | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100.000 | National | Sometimes | 119072915914 |
| NICE [National Institute for Health and Care Excellence]/SMC [Scottish Medicines Consortium]. | Kræft
> Kræft: andet | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Patientadvokatur
> Sundhedsaktivist | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 100.000 | National | Sometimes | 119074520649 |
| We've spoken to NICE [National Institute for Health and Care Excellence]. | Neurologisk
> Smerte | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | National | Rarely | 119075975011 |
| NICE [National Institute for Health and Care Excellence] and MRHA [Medicines and Healthcare products Regulatory Agency]. | Blod
> Blodlidelser: andre | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 5.000 | International | Regularly | 119076415433 |
| We have contributed to NICE [National Institute for Health and Care Excellence] HTAs [Health Technology Assessments]. | Kræft
> Kræft: galdegang | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 1.000 | National | Sometimes | 119076676177 |
| Submission to HTA [Health Technology Assessment]. | Kræft
> Kræft: lunge | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | Do not know | International | Sometimes | 119078029243 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Kræft
> Kræft: æggestokke | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | 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. | Kræft
> Kræft: nyre | Regulatorisk partnerskab
> Involvering med organer for kliniske retningslinjer | 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. | Kræft
> Cancer: hoved & hals | Regulatorisk partnerskab
> Involvering med organer for kliniske retningslinjer | 10.000 | National | Sometimes | 119078408059 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Kræft
> Kræft: nyre | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 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. | Hud
> Atopisk dermatitis/eksem | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 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. | Sjælden
> Sjældne sygdomme: de fleste typer | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 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. | Sjælden
> Tuberøs sklerose | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 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. | Kræft
> Cancer: hoved & hals | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 10.000 | National | Sometimes | 119078408059 |
| Work in conjunction with national and international organisations and charities. | Respiratorisk
> Interstitielle lungesygdomme (ILD) | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | 100 | Local | Regularly | 119038282972 |
| We are an alliance of patient organizations and alliances. | Patientadvokatur
> Patientadvokatur | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | Over 100,000 | International | Regularly | 119068858860 |
| HTAs [Health Technology Assessments] and system updates and shaping. | Kræft
> Kræft: hjerne | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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. | Respiratorisk
> Interstitielle lungesygdomme (ILD) | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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. | Generelt helbred
> Fedme | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 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. | Patientuddannelse
> Patientoplysninger | Indflydelse på politik og lovgivning
> Deltag i offentlige høringer og konsultationer | 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. | Respiratorisk
> Interstitielle lungesygdomme (ILD) | Indflydelse på politik og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Patientsikkerhed
> Iatrogen | Indflydelse på politik og lovgivning
> Mobiliser parlamentarikere og politiske ledere | 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. | Patientsikkerhed
> Iatrogen | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | 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]. | Patientuddannelse
> Patientoplysninger | Prisfastsættelse og overkommelighed
> Deltag i forhandlinger med prisrevisionsnævnet | 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. | Patientsikkerhed
> Iatrogen | Prisfastsættelse og overkommelighed
> Sporing og overvågning af lægemiddelpriser/lægemiddelmangler | 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. | Patientsikkerhed
> Iatrogen | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 5.000 | International | Sometimes | 119051418184 |
| Patient advocacy and support for patients and their families or caregivers. | Blod
> Trombotisk trombocytopenisk purpura (TTP) | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 1.000 | International | Regularly | 119066129426 |
| Advocacy for essential medications list, access in low and middle income countries. | Generelt helbred
> Fedme | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 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. | Patientsikkerhed
> Iatrogen | Forbedring af adgangsveje
> Håndter uligheder i adgang og administration | 5.000 | International | Sometimes | 119051418184 |
| Advocacy for essential medications list, access in low and middle income countries. | Generelt helbred
> Fedme | Forbedring af adgangsveje
> Håndter uligheder i adgang og administration | 1.000 | International | Sometimes | 119076572106 |
| NICE [National Institute for Health and Care Excellence] MTA [Multiple Technology Appraisal] & STA [Single Technology Appraisal] Ultra Orphan. | Neuromuskulær
> Spinal muskelatrofi (SMA) | Forbedring af adgangsveje
> Forbedring af adgangen til sjældne/ultrasjældne behandlinger | 5.000 | National | Regularly | 119059238135 |
| Patient voice through NICE [National Institute for Health and Care Excellence] process. | Sjælden
> Sjældne sygdomme: genetisk | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | 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. | Neuromuskulær
> Muskeldystrofi | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | 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]. | Kræft
> Kræft: hjerne | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | 1.000 | National | Rarely | 119020588088 |
| We link in with NICE [National Institute for Health and Care Excellence] in the UK to represent patient voice. | Sjælden
> Sjældne sygdomme: neurologiske | Evidensbaseret patientinput
> Udnyt patienthistorier og fortællinger om levede erfaringer | 1.000 | National | Rarely | 119020208461 |
| We are often part of NICE [National Institute for Health and Care Excellence] recommendations panels as patient advocates. | Kræft
> Kræft: nyre | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 10.000 | National | Regularly | 119011231734 |
| Often involved in government focus groups in a patient advocacy role. | Neurologisk
> Smerte | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 5.000 | National | Rarely | 119014421396 |
| We represent our community to NICE [National Institute for Health and Care Excellence] and SMC [Scottish Medicines Consortium]. | Kræft
> Kræft: æggestokke | Institutionel styring
> Sikre repræsentation i statslige rådgivende organer | 100.000 | National | Regularly | 119078342555 |
| UKTS [United Kingdom Thalassaemia Society] are part of Prescription charges coalition. | Blod
> Thalassæmi | Institutionel styring
> Effektivt arbejde i netværk med flere interessenter | 5.000 | National | Sometimes | 119069553871 |
| Social inclusion. | Patientadvokatur
> Patientadvokatur | Opretholdelse af patientrettigheder/forbedring af livskvalitet
> Beskyttelse/forbedring af patientoplevelsen | 100 | National | Sometimes | 119045177344 |
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