| 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. | Reumatico
> Sindrome di Sjögren | Partenariato normativo
> Partecipare alle valutazioni di Health Technology Assessment (HTA) e alle revisioni dei rimborsi | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrino
> Disturbi surrenali e ipofisari | Partenariato normativo
> Contribuire alle presentazioni per l'Autorizzazione all'Immissione in Commercio | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endocrino
> Diabete (sia di tipo 1 che di tipo 2) | Partenariato normativo
> Partecipare/facilitare riunioni con responsabili politici/regolatori | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Cancro
> Cancro: polmone | Partenariato normativo
> Partecipare/facilitare riunioni con responsabili politici/regolatori | 1000 | 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. | Reumatico
> Sindrome di Sjögren | Partenariato normativo
> Con altri sostenitori della salute | 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. | Pelle
> Angioedema | Partenariato normativo
> Con altri sostenitori della salute | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Cancro
> Cancro: sangue | Partenariato normativo
> Con altri sostenitori della salute | 1000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Cancro
> Cancro: prostata | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Reumatico
> Sindrome di Sjögren | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Raro
> Malattie rare: bambini/giovani | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 1000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educazione del paziente
> Educazione del paziente | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cancro
> Cancro: prostata | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 1000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativo
> Alzheimer | Influenzare le politiche e la legislazione
> Influenzare le politiche sanitarie e la legislazione | 100.000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educazione del paziente
> Educazione del paziente | Influenzare le politiche e la legislazione
> Contribuire alla redazione della legislazione in materia di salute pubblica | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativo
> Alzheimer | Influenzare le politiche e la legislazione
> Contribuire alla redazione della legislazione in materia di salute pubblica | 100.000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Cardiovascolare
> Ipercolesterolemia familiare (FH) | Influenzare le politiche e la legislazione
> Affrontare barriere/anomalie nell'assistenza medica | 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. | Reumatico
> Sindrome di Sjögren | Advocacy per prezzi e accessibilità economica
> Sostenere prezzi equi dei farmaci | 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. | Cancro
> Cancro: polmone | Advocacy per prezzi e accessibilità economica
> Sostenere prezzi equi dei farmaci | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovascolare
> Ipercolesterolemia familiare (FH) | Advocacy per prezzi e accessibilità economica
> Sostenere l'inclusione del prodotto negli elenchi di rimborso/formulari nazionali | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | Advocacy per prezzi e accessibilità economica
> Partecipare a campagne di sensibilizzazione | 5000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurologico
> Neurofibromatosi (NF) | Miglioramento dei percorsi di accesso
> Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria | 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. | Pelle
> Angioedema | Miglioramento dei percorsi di accesso
> Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria | 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. | Cancro
> Cancro: polmone | Miglioramento dei percorsi di accesso
> Facilitare l'accesso equo ai medicinali/all'assistenza sanitaria | 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. | Reumatico
> Sindrome di Sjögren | Miglioramento dei percorsi di accesso
> Miglioramento dell'accesso alle terapie rare/ultra-rare | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrino
> Disturbi surrenali e ipofisari | Miglioramento dei percorsi di accesso
> Miglioramento dell'accesso alle terapie rare/ultra-rare | 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. | Reumatico
> Sindrome di Sjögren | Contributo del paziente basato sull'evidenza
> Utilizza le informazioni sui pazienti per prendere decisioni informate | 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. | Cancro
> Cancro: polmone | Contributo del paziente basato sull'evidenza
> Utilizza le informazioni sui pazienti per prendere decisioni informate | 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. | Cancro
> Cancro: polmone | Contributo del paziente basato sull'evidenza
> Utilizza le informazioni sui pazienti per prendere decisioni informate | 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. | Pelle
> Angioedema | Contributo del paziente basato sull'evidenza
> Tradurre prove e approfondimenti in contributi politici | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Reumatico
> Sclerodermia | Diagnosi e consegna dei medicinali
> Collaborare alla progettazione di studi clinici | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Cancro
> Cancro: bambini/giovani | Governance istituzionale
> Lavorare efficacemente all'interno di reti multi-stakeholder | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cancro
> Cancro: prostata | Governance istituzionale
> Lavorare efficacemente all'interno di reti multi-stakeholder | 1000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Salute mentale
> Depressione | Governance istituzionale
> Mantenere lo status formale di ente di interesse pubblico o di beneficenza | 1000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Disabilità visiva
> Disabilità visiva | Tutela dei diritti dei pazienti/miglioramento della qualità della vita
> Proteggere/migliorare l'esperienza del paziente | 100 | Regional | Sometimes | 114996630534 |
interazioni
azioni e advocacy
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