| 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. | Rheumatic
> Sjogren’s syndrome | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrine
> Adrenal and pituitary disorders | Regulatory partnership
> Contribute to Marketing Authorisation submissions | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endocrine
> Diabetes (both types 1 and 2) | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Cancer
> Cancer: lung | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 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. | Rheumatic
> Sjogren’s syndrome | Regulatory partnership
> With other healthcare advocates | 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. | Skin
> Angioedema | Regulatory partnership
> With other healthcare advocates | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Cancer
> Cancer: blood | Regulatory partnership
> With other healthcare advocates | 1,000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Cancer
> Cancer: prostate | Impacting policy and legislation
> Influence healthcare policy and legislation | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Rheumatic
> Sjogren’s syndrome | Impacting policy and legislation
> Influence healthcare policy and legislation | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Rare
> Rare diseases: children/young people | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patient education
> Patient education | Impacting policy and legislation
> Influence healthcare policy and legislation | 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 | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerative
> Alzheimer’s | Impacting policy and legislation
> Influence healthcare policy and legislation | 100,000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patient education
> Patient education | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegenerative
> Alzheimer’s | Impacting policy and legislation
> Contribute to the drafting of public health legislation | 100,000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Cardiovascular
> Familial hypercholesterolaemia (FH) | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 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. | Rheumatic
> Sjogren’s syndrome | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 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: lung | Pricing and affordability advocacy
> Advocate for fair medicine pricing | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovascular
> Familial hypercholesterolaemia (FH) | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | Pricing and affordability advocacy
> Engaging in awareness campaigns | 5,000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurological
> Neurofibromatosis (NF) | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Skin
> Angioedema | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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: lung | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 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. | Rheumatic
> Sjogren’s syndrome | Improving access pathways
> Improving access to rare/ultra-rare therapies | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrine
> Adrenal and pituitary disorders | Improving access pathways
> Improving access to rare/ultra-rare therapies | 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. | Rheumatic
> Sjogren’s syndrome | Evidence-based patient input
> Use patient insights to inform decisions | 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: lung | Evidence-based patient input
> Use patient insights to inform decisions | 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: lung | Evidence-based patient input
> Use patient insights to inform decisions | 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. | Skin
> Angioedema | Evidence-based patient input
> Translate evidence and insights into policy input | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Rheumatic
> Scleroderma | Diagnosis and medicines delivery
> Collaborate on clinical trial design | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Cancer
> Cancer: children’s / young people’s | Institutional governance
> Working effectively within multi-stakeholder networks | 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 | Institutional governance
> Working effectively within multi-stakeholder networks | 1,000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Mental health
> Depression | Institutional governance
> Maintain formal status as public interest or charitable entity | 1,000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Visual impairment
> Visual impairment | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 100 | Regional | Sometimes | 114996630534 |
interactions
actions & advocacy
7 mentions
