| 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. | 류마티스성
> 쇼그렌 증후군 | 규제 파트너십
> 건강기술평가(HTA) 및 급여 검토에 참여 | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | 내분비
> 부신 및 뇌하수체 장애 | 규제 파트너십
> 마케팅 허가 제출에 기여 | 100 | National | Rarely | 119052076100 |
| We are engaged in formal consultation processes. | 내분비
> 당뇨병(1형 및 2형 모두) | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | Do not know | National | Rarely | 119035824614 |
| Advisory board of Swissmedic. | 암
> 암: 폐 | 규제 파트너십
> 정책 입안자/규제 기관과의 회의 참석/진행 | 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. | 류마티스성
> 쇼그렌 증후군 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 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. | 스킨
> 혈관부종 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 100 | National | Sometimes | 119052980204 |
| Via our umbrella organisation HOPOS [Hemato-Onkologische Patientenorganisationen Schweiz - Swiss Umbrella Organisation of Haemato-Oncological Patient Organisations]. | 암
> 암: 혈액 | 규제 파트너십
> 다른 의료 지지자들과 함께 | 1,000 | National | Rarely | 119077844806 |
| To advocate for the establishment of an information policy directed at local authorities. | 암
> 암: 전립선 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100 | Regional | Sometimes | 115056429435 |
| Participation in European-level policy and regulatory discussions affecting access to medicines for rare and systemic autoimmune diseases. | 류마티스성
> 쇼그렌 증후군 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | We do not communicate with patients directly | International | Regularly | 119025245981 |
| Legislative adaptation through ongoing communication. | 희귀
> 희귀 질환: 아동/청소년 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 1,000 | National | Sometimes | 119035891744 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | 환자 교육
> 환자 교육 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100 | National | Sometimes | 119035955624 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | 암
> 암: 전립선 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 1,000 | National | Regularly | 119044110604 |
| Advocacy representation in relation to the new care legislation. | 신경퇴행성
> 알츠하이머 | 정책 및 법률에 영향 미치기
> 의료 정책 및 법률에 영향력 행사 | 100,000 | National | Regularly | 119044141359 |
| Consultation on legislative drafts, and specific requests for assistance — whether material, structural, or socio-economic in nature. | 환자 교육
> 환자 교육 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 100 | National | Sometimes | 119035955624 |
| Advocacy representation in relation to the new care legislation. | 신경퇴행성
> 알츠하이머 | 정책 및 법률에 영향 미치기
> 공중 보건 법률 초안 작성에 기여 | 100,000 | National | Regularly | 119044141359 |
| Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options. | 심혈관
> 가족성 고콜레스테롤혈증 (FH) | 정책 및 법률에 영향 미치기
> 의료 서비스의 장벽/이상 현상 해결 | 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. | 류마티스성
> 쇼그렌 증후군 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | 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. | 암
> 암: 폐 | 가격 책정 및 affordability 옹호
> 공정한 의약품 가격 책정 옹호 | We do not communicate with patients directly | International | Sometimes | 119058458189 |
| Support with reimbursement approvals. | 심혈관
> 가족성 고콜레스테롤혈증 (FH) | 가격 책정 및 affordability 옹호
> 제품의 급여 목록/국가 처방집 등재 옹호 | 100 | National | Sometimes | 119072887138 |
| Primarily through public appeals, media coverage, and similar channels [on issues of drug pricing]. | HIV
> HIV | 가격 책정 및 affordability 옹호
> 인식 제고 캠페인 참여 | 5,000 | National | Rarely | 119035314201 |
| Assisting a family in accessing a medication covered by their insurance. | 신경학적
> 신경섬유종증(NF) | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 스킨
> 혈관부종 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 암
> 암: 폐 | 접근 경로 개선
> 의약품/의료서비스에 대한 공평한 접근 촉진 | 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. | 류마티스성
> 쇼그렌 증후군 | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | We do not communicate with patients directly | International | Regularly | 119025245981 |
| For the authorisation of medicinal products for rare diseases. | 내분비
> 부신 및 뇌하수체 장애 | 접근 경로 개선
> 희귀/초희귀 치료제 접근성 개선 | 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. | 류마티스성
> 쇼그렌 증후군 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 암
> 암: 폐 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 암
> 암: 폐 | 근거 기반 환자 의견
> 환자 인사이트를 활용하여 의사 결정에 반영하세요 | 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. | 스킨
> 혈관부종 | 근거 기반 환자 의견
> 증거와 인사이트를 정책 입력으로 전환 | 100 | National | Sometimes | 119052980204 |
| Participation in the RDA [Research Data Alliance]-Forum / CTA [Clinical Trial Authorisation] activities. | 류마티스성
> 경피증 | 진단 및 의약품 배달
> 임상 시험 설계에 대해 협력하기 | 100 | National | Rarely | 119056569513 |
| Through physicians, hospitals, and participation in PPI [Patient and Public Involvement] meetings. | 암
> 암: 소아/청소년 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 100 | National | Sometimes | 115032067078 |
| The Swiss Cancer Plan, in collaboration with Oncosuisse and the BAG [Bundesamt für Gesundheit – Federal Office of Public Health]. | 암
> 암: 전립선 | 기관 거버넌스
> 다중 이해관계자 네트워크 내에서 효과적으로 협력하기 | 1,000 | National | Regularly | 119044110604 |
| We are a non-profit (ZEWO [Zentralstelle für Wohlfahrtsunternehmen - Central Office for Welfare Organisations]-certified) organisation. | 정신 건강
> 우울증 | 기관 거버넌스
> 공익 또는 자선 단체로서의 공식적인 지위 유지 | 1,000 | Regional | No | 119063159875 |
| Support for obtaining AI [Assurance Invalidité – Disability Insurance]. | 시각 장애
> 시각 장애 | 환자 권리 보호/삶의 질 향상
> 환자 경험 보호/개선 | 100 | Regional | Sometimes | 114996630534 |
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