| 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. | Reumático
> Síndrome de Sjögren | Asociación regulatoria
> Participar en evaluaciones de Evaluación de Tecnologías Sanitarias (ETS) y reembolso | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrino
> Trastornos suprarrenales e hipofisarios | Asociación regulatoria
> Contribuir a las presentaciones de Autorización de Comercialización | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endocrino
> Diabetes (tipos 1 y 2) | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Cáncer
> Cáncer: pulmón | Asociación regulatoria
> Asistir/facilitar reuniones con responsables políticos/reguladores | 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. | Reumático
> Síndrome de Sjögren | Asociación regulatoria
> Con otros defensores de la salud | 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. | Piel
> Angioedema | Asociación regulatoria
> Con otros defensores de la salud | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Cáncer
> Cáncer: sangre | Asociación regulatoria
> Con otros defensores de la salud | 1000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Cáncer
> Cáncer: próstata | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Reumático
> Síndrome de Sjögren | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Raro
> Enfermedades raras: niños/jóvenes | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educación del paciente
> Educación del paciente | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cáncer
> Cáncer: próstata | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 1000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativo
> Alzheimer | Impactando en políticas y legislación
> Influir en la política sanitaria y la legislación | 100.000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educación del paciente
> Educación del paciente | Impactando en políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativo
> Alzheimer | Impactando en políticas y legislación
> Contribuir a la redacción de legislación de salud pública | 100.000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Cardiovascular
> Hipercolesterolemia familiar (HF) | Impactando en políticas y legislación
> Abordando barreras/anomalías en la atención médica | 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. | Reumático
> Síndrome de Sjögren | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | 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. | Cáncer
> Cáncer: pulmón | Defensa de precios y asequibilidad
> Abogar por precios justos de los medicamentos | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovascular
> Hipercolesterolemia familiar (HF) | Defensa de precios y asequibilidad
> Abogando por la inclusión del producto en listas de reembolso/formularios nacionales | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | VIH
> VIH | Defensa de precios y asequibilidad
> Participar en campañas de concienciación | 5000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurológico
> Neurofibromatosis (NF) | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención 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. | Piel
> Angioedema | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención 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. | Cáncer
> Cáncer: pulmón | Mejora de las vías de acceso
> Facilitar el acceso equitativo a medicamentos/atención 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. | Reumático
> Síndrome de Sjögren | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrino
> Trastornos suprarrenales e hipofisarios | Mejora de las vías de acceso
> Mejora del acceso a terapias raras/ultrararas | 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. | Reumático
> Síndrome de Sjögren | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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. | Cáncer
> Cáncer: pulmón | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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. | Cáncer
> Cáncer: pulmón | Aportaciones del paciente basadas en evidencia
> Utiliza los conocimientos del paciente para tomar decisiones | 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. | Piel
> Angioedema | Aportaciones del paciente basadas en evidencia
> Traducir evidencias e ideas en aportaciones para políticas | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Reumático
> Esclerodermia | Diagnóstico y entrega de medicamentos
> Colaborar en el diseño de ensayos clínicos | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Cáncer
> Cáncer: niños/jóvenes | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Cáncer
> Cáncer: próstata | Gobernanza institucional
> Trabajar de manera efectiva dentro de redes con múltiples partes interesadas | 1000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Salud mental
> Depresión | Gobernanza institucional
> Mantener el estatus formal como entidad de interés público o benéfica | 1000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Discapacidad visual
> Discapacidad visual | Defender los derechos del paciente/mejorar la calidad de vida
> Proteger/mejorar la experiencia del paciente | 100 | Regional | Sometimes | 114996630534 |
interacciones
acciones y defensa
7 menciones
