| 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. | Rhumatismal
> Syndrome de Sjögren | Partenariat réglementaire
> Participer aux évaluations des technologies de santé (ETS) et aux examens de remboursement | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrinien
> Troubles surrénaliens et hypophysaires | Partenariat réglementaire
> Contribuer aux soumissions d'autorisation de mise sur le marché | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endocrinien
> Diabète (types 1 et 2) | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Cancer
> Cancer : poumon | Partenariat réglementaire
> Assister/faciliter des réunions avec des décideurs politiques/régulateurs | 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. | Rhumatismal
> Syndrome de Sjögren | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 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. | Peau
> Angiœdème | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Cancer
> Cancer : sang | Partenariat réglementaire
> Avec d'autres défenseurs des soins de santé | 1 000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Cancer
> Cancer : prostate | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Rhumatismal
> Syndrome de Sjögren | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Rare
> Maladies rares : enfants/jeunes | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Éducation du patient
> Éducation du patient | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cancer
> Cancer : prostate | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 1 000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodégénératif
> Alzheimer | Influencer les politiques et la législation
> Influencer les politiques et la législation en matière de santé | 100 000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Éducation du patient
> Éducation du patient | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodégénératif
> Alzheimer | Influencer les politiques et la législation
> Contribuer à la rédaction de la législation en matière de santé publique | 100 000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Cardiovasculaire
> Hypercholestérolémie familiale (HF) | Influencer les politiques et la législation
> Traitement des obstacles/anomalies dans les soins médicaux | 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. | Rhumatismal
> Syndrome de Sjögren | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | 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. | Cancer
> Cancer : poumon | Plaidoyer pour la tarification et l'accessibilité financière
> Plaider pour une tarification équitable des médicaments | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovasculaire
> Hypercholestérolémie familiale (HF) | Plaidoyer pour la tarification et l'accessibilité financière
> Plaidoyer pour l'inclusion du produit dans les listes de remboursement/formulaires nationaux | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | VIH
> VIH | Plaidoyer pour la tarification et l'accessibilité financière
> Participer à des campagnes de sensibilisation | 5 000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurologique
> Neurofibromatose (NF) | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Peau
> Angiœdème | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Cancer
> Cancer : poumon | Amélioration des voies d'accès
> Faciliter l'accès équitable aux médicaments/soins de santé | 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. | Rhumatismal
> Syndrome de Sjögren | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrinien
> Troubles surrénaliens et hypophysaires | Amélioration des voies d'accès
> Améliorer l'accès aux thérapies rares/ultra-rares | 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. | Rhumatismal
> Syndrome de Sjögren | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Cancer
> Cancer : poumon | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Cancer
> Cancer : poumon | Contribution des patients fondée sur des données probantes
> Utilisez les informations sur les patients pour éclairer les décisions | 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. | Peau
> Angiœdème | Contribution des patients fondée sur des données probantes
> Traduire les preuves et les informations en contributions politiques | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Rhumatismal
> Sclérodermie | Diagnostic et livraison de médicaments
> Collaborer sur la conception d'essais cliniques | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Cancer
> Cancer : enfants / jeunes | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cancer
> Cancer : prostate | Gouvernance institutionnelle
> Travailler efficacement au sein de réseaux multi-parties prenantes | 1 000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Santé mentale
> Dépression | Gouvernance institutionnelle
> Maintenir le statut formel d'entité d'intérêt public ou caritative | 1 000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Déficience visuelle
> Déficience visuelle | Défense des droits des patients/amélioration de la qualité de vie
> Protéger/améliorer l'expérience du patient | 100 | Regional | Sometimes | 114996630534 |
interactions
actions et plaidoyer
7 mentions
