| 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 Tecnologias de Saúde (ATS) e de reembolso | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endócrino
> Perturbações adrenais e hipofisárias | Parceria regulatória
> Contribuir para submissões de Autorização de Introdução no Mercado | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endócrino
> Diabetes (tipos 1 e 2) | Parceria regulatória
> Participar/facilitar reuniões com decisores políticos/reguladores | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Cancro
> Cancro: pulmão | Parceria regulatória
> Participar/facilitar reuniões com decisores 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 | Parceria regulatória
> Com outros defensores de 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 de saúde | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Cancro
> Cancro: sangue | Parceria regulatória
> Com outros defensores de saúde | 1000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Cancro
> Cancro: próstata | Impacto nas políticas e legislação
> Influenciar a política e legislação 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 | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Raro
> Doenças raras: crianças/jovens | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Educação do doente
> Educação do doente | Impacto nas políticas e legislação
> Influenciar a política e legislação 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]. | Cancro
> Cancro: próstata | Impacto nas políticas e legislação
> Influenciar a política e legislação de saúde | 1000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerativa
> Alzheimer | Impacto nas políticas e legislação
> Influenciar a política e legislação 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 doente
> Educação do doente | Impacto nas 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 | Impacto nas 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) | Impacto nas políticas e legislação
> Abordar barreiras/anomalias nos cuidados médicos | 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
> Defender 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. | Cancro
> Cancro: pulmão | Defesa de preços e acessibilidade financeira
> Defender 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
> Defender 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
> Participar em campanhas de sensibilização | 5000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurológico
> Neurofibromatose (NF) | Melhorar 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 | Melhorar 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. | Cancro
> Cancro: pulmão | Melhorar 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 | Melhorar os caminhos de acesso
> Melhorar o acesso a terapias raras/ultra-raras | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endócrino
> Perturbações adrenais e hipofisárias | Melhorar os caminhos de acesso
> Melhorar o acesso a terapias raras/ultra-raras | 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 doente baseada em evidências
> Utilize os insights dos pacientes para informar 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. | Cancro
> Cancro: pulmão | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar 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. | Cancro
> Cancro: pulmão | Contribuição do doente baseada em evidências
> Utilize os insights dos pacientes para informar 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 doente baseada em evidências
> Traduzir evidências e conhecimentos em contributos 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. | Cancro
> Cancro: crianças / jovens | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 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: próstata | Governação institucional
> Trabalhar eficazmente em redes com múltiplos intervenientes | 1000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Saúde mental
> Depressão | Governação institucional
> Manter o estatuto formal de entidade de interesse público ou de caráter beneficente | 1000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Deficiência visual
> Deficiência visual | Defender os direitos dos doentes/melhorar a qualidade de vida
> Proteger/melhorar a experiência do doente | 100 | Regional | Sometimes | 114996630534 |
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