| 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 | Parceria regulatória
> Participar em avaliações de Avaliação de Tecnologia em Saúde (ATS) e reembolso | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endócrino
> Distúrbios adrenais e hipofisários | Parceria regulatória
> Contribuir para submissões de Autorização de Comercialização | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endócrino
> Diabetes (tipos 1 e 2) | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Câncer
> Câncer: pulmão | Parceria regulatória
> Participar/facilitar reuniões com formuladores de políticas/reguladores | 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. | Reumático
> Síndrome de Sjögren | Parceria regulatória
> Com outros defensores da saúde | 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. | Pele
> Angioedema | Parceria regulatória
> Com outros defensores da saúde | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Câncer
> Câncer: sangue | Parceria regulatória
> Com outros defensores da saúde | 1.000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Câncer
> Câncer: próstata | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 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 políticas e legislação
> Influenciar políticas e legislações de saúde | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Raro
> Doenças raras: crianças/jovens | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educação do paciente
> Educação do paciente | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Câncer
> Câncer: próstata | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 1.000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativa
> Alzheimer's | Impactando políticas e legislação
> Influenciar políticas e legislações de saúde | 100.000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educação do paciente
> Educação do paciente | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde pública | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativa
> Alzheimer's | Impactando políticas e legislação
> Contribuir para a elaboração de legislação de saúde 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 políticas e legislação
> Abordando barreiras/anomalias no atendimento médico | 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 | Defesa de preços e acessibilidade financeira
> Defenda preços justos para 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. | Câncer
> Câncer: pulmão | Defesa de preços e acessibilidade financeira
> Defenda preços justos para medicamentos | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovascular
> Hipercolesterolemia familiar (HF) | Defesa de preços e acessibilidade financeira
> Defendendo a inclusão do produto em listas de reembolso/formulários nacionais | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | Defesa de preços e acessibilidade financeira
> Participando de campanhas de conscientização | 5.000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurológico
> Neurofibromatose (NF) | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Pele
> Angioedema | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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. | Câncer
> Câncer: pulmão | Melhorando os caminhos de acesso
> Facilitar o acesso equitativo a medicamentos/cuidados de saúde | 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 | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endócrino
> Distúrbios adrenais e hipofisários | Melhorando os caminhos de acesso
> Melhorando o acesso a terapias raras/ultrarraras | 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 | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Câncer
> Câncer: pulmão | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Câncer
> Câncer: pulmão | Contribuição do paciente baseada em evidências
> Use insights do paciente para embasar decisões | 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. | Pele
> Angioedema | Contribuição do paciente baseada em evidências
> Traduza evidências e insights em subsídios para políticas | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Reumático
> Esclerodermia | Diagnóstico e entrega de medicamentos
> Colaborar no design de ensaios clínicos | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Câncer
> Câncer: crianças / jovens | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Câncer
> Câncer: próstata | Governança institucional
> Trabalhando de forma eficaz em redes com múltiplos stakeholders | 1.000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Saúde mental
> Depressão | Governança institucional
> Manter status formal como entidade de interesse público ou beneficente | 1.000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Deficiência visual
> Deficiência visual | Defendendo os direitos dos pacientes/melhorando a qualidade de vida
> Protegendo/melhorando a experiência do paciente | 100 | Regional | Sometimes | 114996630534 |
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