| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. Patient input and advocacy in consultations related to HTA, reimbursement frameworks, and access pathways. Collaboration with European patient platforms and alliances to convey patient perspectives on unmet needs, access delays, and equity in pricing and reimbursement decisions. | Reumatisk
> Sjögrens syndrom | Regulatorisk partnerskab
> Deltag i Health Technology Assessment (HTA) og refusionsgennemgange | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endokrin
> Binyre- og hypofyselidelser | Regulatorisk partnerskab
> Bidrag til ansøgninger om markedsføringstilladelse | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endokrin
> Diabetes (både type 1 og type 2) | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Kræft
> Kræft: lunge | Regulatorisk partnerskab
> Deltag i/faciliter møder med politiske beslutningstagere/regulatorer | 1.000 | National | Sometimes | 119061399060 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. Patient input and advocacy in consultations related to HTA, reimbursement frameworks, and access pathways. Collaboration with European patient platforms and alliances to convey patient perspectives on unmet needs, access delays, and equity in pricing and reimbursement decisions. | Reumatisk
> Sjögrens syndrom | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | We do not communicate with patients directly | International | Regularly | 119025245981 |
| This has been achieved, for example, through the submission of concerns regarding access to therapies via umbrella organisations such as ProRaris, as well as through targeted engagement and formal submissions to relevant healthcare stakeholders. | Hud
> Angioødem | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Kræft
> Kræft: blod | Regulatorisk partnerskab
> Med andre sundhedsforkæmpere | 1.000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Kræft
> Kræft: prostata | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Reumatisk
> Sjögrens syndrom | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Sjælden
> Sjældne sygdomme: børn/unge | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 1.000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patientuddannelse
> Patientuddannelse | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Kræft
> Kræft: prostata | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 1.000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativ
> Alzheimers | Indflydelse på politik og lovgivning
> Påvirk sundhedspolitik og lovgivning | 100.000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patientuddannelse
> Patientuddannelse | Indflydelse på politik og lovgivning
> Bidrage til udarbejdelsen af folkesundhedslovgivning | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativ
> Alzheimers | Indflydelse på politik og lovgivning
> Bidrage til udarbejdelsen af folkesundhedslovgivning | 100.000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Kardiovaskulær
> Familiær hyperkolesterolæmi (FH) | Indflydelse på politik og lovgivning
> Håndtering af barrierer/anomalier i medicinsk behandling | 100 | National | Sometimes | 119072887138 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. Patient input and advocacy in consultations related to HTA, reimbursement frameworks, and access pathways. Collaboration with European patient platforms and alliances to convey patient perspectives on unmet needs, access delays, and equity in pricing and reimbursement decisions. | Reumatisk
> Sjögrens syndrom | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | We do not communicate with patients directly | International | Regularly | 119025245981 |
| We work to ensure that effective medicines are available to patients in a fair and timely way, and we explain how pricing and reimbursement decisions directly affect patients and their families in real life. | Kræft
> Kræft: lunge | Prisfastsættelse og overkommelighed
> Fortaler for retfærdig medicinprissætning | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Kardiovaskulær
> Familiær hyperkolesterolæmi (FH) | Prisfastsættelse og overkommelighed
> Fortalelse af optagelse af produktet på refusionslister/nationale formularer | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | Prisfastsættelse og overkommelighed
> Deltage i oplysningskampagner | 5.000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurologisk
> Neurofibromatose (NF) | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 100 | Regional | Rarely | 115023088362 |
| This has been achieved, for example, through the submission of concerns regarding access to therapies via umbrella organisations such as ProRaris, as well as through targeted engagement and formal submissions to relevant healthcare stakeholders. | Hud
> Angioødem | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | 100 | National | Sometimes | 119052980204 |
| We work to ensure that effective medicines are available to patients in a fair and timely way, and we explain how pricing and reimbursement decisions directly affect patients and their families in real life. | Kræft
> Kræft: lunge | Forbedring af adgangsveje
> Fremme retfærdig adgang til medicin/sundhedspleje | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. Patient input and advocacy in consultations related to HTA, reimbursement frameworks, and access pathways. Collaboration with European patient platforms and alliances to convey patient perspectives on unmet needs, access delays, and equity in pricing and reimbursement decisions. | Reumatisk
> Sjögrens syndrom | Forbedring af adgangsveje
> Forbedring af adgangen til sjældne/ultrasjældne behandlinger | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endokrin
> Binyre- og hypofyselidelser | Forbedring af adgangsveje
> Forbedring af adgangen til sjældne/ultrasjældne behandlinger | 100 | National | Rarely | 119052076100 |
| ... Collaboration with European patient platforms and alliances to convey patient perspectives on unmet needs, access delays, and equity in pricing and reimbursement decisions. | Reumatisk
> Sjögrens syndrom | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | We do not communicate with patients directly | International | Regularly | 119025245981 |
| We speak up to make sure patients' views are properly taken into account when decisions are made about access to new treatments, their cost, and their value. | Kræft
> Kræft: lunge | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| We speak up to make sure patients' views are properly taken into account when decisions are made about access to new treatments, their cost, and their value. | Kræft
> Kræft: lunge | Evidensbaseret patientinput
> Brug patientindsigt til at informere beslutninger | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| This has been achieved, for example, through the submission of concerns regarding access to therapies via umbrella organisations such as ProRaris, as well as through targeted engagement and formal submissions to relevant healthcare stakeholders. | Hud
> Angioødem | Evidensbaseret patientinput
> Omsæt evidens og indsigter til politisk input | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Reumatisk
> Sklerodermi | Diagnose og medicinlevering
> Samarbejd om design af kliniske forsøg | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Kræft
> Kræft: børn/unge | Institutionel styring
> Effektivt arbejde i netværk med flere interessenter | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Kræft
> Kræft: prostata | Institutionel styring
> Effektivt arbejde i netværk med flere interessenter | 1.000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Mental sundhed
> Depression | Institutionel styring
> Oprethold formel status som offentlig interesse- eller velgørenhedsenhed | 1.000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Synshandicap
> Synshandicap | Opretholdelse af patientrettigheder/forbedring af livskvalitet
> Beskyttelse/forbedring af patientoplevelsen | 100 | Regional | Sometimes | 114996630534 |
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