| 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. | Reumatisch
> Syndroom van Sjögren | Regelgevend partnerschap
> Deelnemen aan Health Technology Assessment (HTA) en vergoedingsbeoordelingen | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrien
> Bijnier- en hypofyseaandoeningen | Regelgevend partnerschap
> Bijdragen aan indieningen voor Handelsvergunningen | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | Endocrien
> Diabetes (zowel type 1 als type 2) | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | Kanker
> Kanker: long | Regelgevend partnerschap
> Bijwonen/faciliteren van vergaderingen met beleidsmakers/regelgevers | 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. | Reumatisch
> Syndroom van Sjögren | Regelgevend partnerschap
> Met andere zorgadvocaten | 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. | Huid
> Angio-oedeem | Regelgevend partnerschap
> Met andere zorgadvocaten | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | Kanker
> Kanker: bloed | Regelgevend partnerschap
> Met andere zorgadvocaten | 1.000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | Kanker
> Kanker: prostaat | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | Reumatisch
> Syndroom van Sjögren | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | Zeldzaam
> Zeldzame ziekten: kinderen/jongeren | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patiënteneducatie
> Patiënteneducatie | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Kanker
> Kanker: prostaat | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 1.000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | Neurodegeneratief
> Alzheimer | Beleid en wetgeving beïnvloeden
> Beïnvloed het gezondheidsbeleid en de wetgeving | 100.000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | Patiënteneducatie
> Patiënteneducatie | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | Neurodegeneratief
> Alzheimer | Beleid en wetgeving beïnvloeden
> Bijdragen aan het opstellen van volksgezondheidswetgeving | 100.000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | Cardiovasculair
> Familiaire hypercholesterolemie (FH) | Beleid en wetgeving beïnvloeden
> Barrières/anomalieën in de medische zorg aanpakken | 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. | Reumatisch
> Syndroom van Sjögren | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | 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. | Kanker
> Kanker: long | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleit voor eerlijke medicijnprijzen | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | Cardiovasculair
> Familiaire hypercholesterolemie (FH) | Pleitbezorging voor prijsstelling en betaalbaarheid
> Pleiten voor opname van het product in vergoedingslijsten/nationale formularia | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | Pleitbezorging voor prijsstelling en betaalbaarheid
> Deelnemen aan bewustmakingscampagnes | 5.000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | Neurologisch
> Neurofibromatose (NF) | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Huid
> Angio-oedeem | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Kanker
> Kanker: long | Toegangspaden verbeteren
> Faciliteer gelijke toegang tot medicijnen/gezondheidszorg | 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. | Reumatisch
> Syndroom van Sjögren | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | Endocrien
> Bijnier- en hypofyseaandoeningen | Toegangspaden verbeteren
> Verbetering van de toegang tot zeldzame/ultrazeldzame therapieën | 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. | Reumatisch
> Syndroom van Sjögren | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Kanker
> Kanker: long | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Kanker
> Kanker: long | Op bewijs gebaseerde patiëntinbreng
> Gebruik patiëntinzichten om beslissingen te onderbouwen | 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. | Huid
> Angio-oedeem | Op bewijs gebaseerde patiëntinbreng
> Vertaal bewijs en inzichten naar beleidsinput | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | Reumatisch
> Sclerodermie | Diagnose en medicijnbezorging
> Samenwerken aan het ontwerp van klinische proeven | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | Kanker
> Kanker: kinderen / jongeren | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | Kanker
> Kanker: prostaat | Institutioneel bestuur
> Effectief werken binnen netwerken met meerdere belanghebbenden | 1.000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | Geestelijke gezondheid
> Depressie | Institutioneel bestuur
> Formele status als publiekrechtelijke of charitatieve instelling behouden | 1.000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | Visuele beperking
> Visuele beperking | Handhaving van patiëntenrechten/verbetering van de kwaliteit van leven
> De patiëntervaring beschermen/verbeteren | 100 | Regional | Sometimes | 114996630534 |
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