| We advocate on behalf of patients with mutual health insurance funds. | Medical research
> Medical Research | Regulatory partnership
> Working with regulatory bodies | 100 | National | Rarely | 115057856231 |
| Eligible to the EMA [European Medicines Agency] and invited to meetings and events, been part of regulatory evaluations. Member of EU HTA [Health Technology Assessment] stakeholder forum. | Neurodegenerative
> Huntington’s disease | Regulatory partnership
> Working with regulatory bodies | Do not know | International | Sometimes | 119075658991 |
| Drug Reimbursement Committee [Commissie Terugbetaling Geneesmiddelen – Drug Reimbursement Committee] via VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform]. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 10,000 | Regional | Sometimes | 114996669704 |
| Providing information to the organisation that represents us in CTG [College Tarieven Gezondheidszorg - Healthcare Tariffs Board] reimbursement consultations concerning a new medicine. | Patient education
> Patient information | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | Regional | Sometimes | 115028426381 |
| Through the Luss [Ligue des Usagers des Services de Santé – League of Health Service Users], which brings together several patient associations and has a member sitting on the Drug Reimbursement Committee at the INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance]. | Blood
> Sickle cell disease | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Do not know | National | Rarely | 115028443749 |
| FAGG [Federaal Agentschap voor Geneesmiddelen en Gezondheidsproducten – Federal Agency for Medicines and Health Products], KCE [Federaal Kenniscentrum voor de Gezondheidszorg – Belgian Health Care Knowledge Centre], and RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance]/CTG [Commissie Tegemoetkoming Geneesmiddelen – Drug Reimbursement Committee]. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | We do not communicate with patients directly | Regional | Sometimes | 115034595480 |
| Completed several CTG [Commissie Toekenning Geneesmiddelen – Medicine Allocation Committee] dossiers. | Cancer
> Cancer: lung | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | National | Sometimes | 115036954847 |
| Input from the patient organisation on reimbursement dossiers for new medications (via an extensive questionnaire). | Cancer
> Cancer: lung | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 1,000 | Regional | Sometimes | 115039053506 |
| Expert assessments in support of drug reimbursement decisions. | Neurodegenerative
> Dementia | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Do not know | Regional | Sometimes | 115043013133 |
| We provide advisory input through VPP [Vlaams Patiëntenplatform – Flemish Patient Platform] and, on occasion, in response to questionnaires issued by RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance]. | Allergy
> Asthma, allergy, atopic dermatitis, eczema | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | Do not know | National | Sometimes | 115043032741 |
| Advisory board of RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance] in connection with applications for reimbursement modalities for new medicines. | Bleeding
> Bleeding disorders: most types | Regulatory partnership
> Participate in Health Technology Assessment (HTA) and reimbursement reviews | 5,000 | National | Rarely | 115049435993 |
| We participate in stakeholder engagement sessions organised by Pharma.be and FAGG [Federaal Agentschap voor Geneesmiddelen en Gezondheidsproducten – Federal Agency for Medicines and Health Products]. | Blood
> Blood disorders: ITP | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 100 | National | Sometimes | 115021567311 |
| FAGG [Federaal Agentschap voor Geneesmiddelen en Gezondheidsproducten – Federal Agency for Medicines and Health Products], KCE [Federaal Kenniscentrum voor de Gezondheidszorg – Belgian Health Care Knowledge Centre], and RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance]/CTG [Commissie Tegemoetkoming Geneesmiddelen – Drug Reimbursement Committee]. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | We do not communicate with patients directly | Regional | Sometimes | 115034595480 |
| INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance], Minister of Health. | Cancer
> Cancer: blood | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | 1,000 | National | Regularly | 115043127768 |
| EMA [European Medicines Agency] PCWP [Patients' and Consumers' Working Party] Forum at EU Parliament activities in our members' countries. | Immune
> Immunocompromised | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | Over 100,000 | International | Regularly | 119074504996 |
| Eligible to the EMA [European Medicines Agency] and invited to meetings and events, been part of regulatory evaluations. Member of EU HTA [Health Technology Assessment] stakeholder forum. | Neurodegenerative
> Huntington’s disease | Regulatory partnership
> Attend/facilitate meetings with policymakers/regulators | Do not know | International | Sometimes | 119075658991 |
| Drug Reimbursement Committee [Commissie Terugbetaling Geneesmiddelen – Drug Reimbursement Committee] via VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform]. | Rheumatic
> Rheumatic diseases: most types | Regulatory partnership
> With other healthcare advocates | 10,000 | Regional | Sometimes | 114996669704 |
| Via the VPP [Vlaams Patiënten Platform – Flemish Patients' Platform] on behalf of Alnylam Pharmaceuticals. | Neurodegenerative
> Amyloidosis | Regulatory partnership
> With other healthcare advocates | 1,000 | National | Sometimes | 114996917912 |
| In its newsletter No. 71 of November 2024, BCC [Belgian Brain Council - Conseil Belge du Cerveau] expressed its support for the statement issued by the Alzheimer Europe association in response to the EMA [European Medicines Agency]'s refusal to grant a marketing authorisation for Leqembi (lecanemab) for the treatment of mild cognitive impairment (memory and thinking disorders). | Mental health
> Mental health: most conditions | Regulatory partnership
> With other healthcare advocates | 1,000 | International | Sometimes | 115006691079 |
| Providing information to the organisation that represents us in CTG [College Tarieven Gezondheidszorg - Healthcare Tariffs Board] reimbursement consultations concerning a new medicine. | Patient education
> Patient information | Regulatory partnership
> With other healthcare advocates | 1,000 | Regional | Sometimes | 115028426381 |
| By being a member of umbrella organisations. | Rheumatic
> Scleroderma | Regulatory partnership
> With other healthcare advocates | 100 | National | Sometimes | 115033503861 |
| By being a member of umbrella organisations. | Rheumatic
> Scleroderma | Regulatory partnership
> With other healthcare advocates | 100 | National | Sometimes | 115033503861 |
| Via VPP [Vlaams Patiëntenplatform – Flemish Patients' Platform]. | Cancer
> Cancer: rare | Regulatory partnership
> With other healthcare advocates | 100 | Regional | Rarely | 115043019020 |
| We provide advisory input through VPP [Vlaams Patiëntenplatform – Flemish Patient Platform]. | Allergy
> Asthma, allergy, atopic dermatitis, eczema | Regulatory partnership
> With other healthcare advocates | Do not know | National | Sometimes | 115043032741 |
| We provide advisory input through VPP [Vlaams Patiëntenplatform – Flemish Patient Platform]. | Allergy
> Asthma, allergy, atopic dermatitis, eczema | Regulatory partnership
> With other healthcare advocates | Do not know | National | Sometimes | 115043032741 |
| Through our association OntmoetPijn, we are members of the Vlaamse Pijnliga [Flemish Pain League] and use that platform to advocate on behalf of people living with chronic pain. | Neurological
> Pain | Regulatory partnership
> With other healthcare advocates | 100 | Regional | Sometimes | 115046494165 |
| We are a member of VPP [Vlaams Patiëntenplatform – Flemish Patients' Platform]. They advocate on our behalf. | Neuromuscular
> Neuromuscular diseases: most types | Regulatory partnership
> With other healthcare advocates | 1,000 | Regional | No | 115055397447 |
| EMA [European Medicines Agency] PCWP [Patients' and Consumers' Working Party] Forum at EU Parliament activities in our members' countries. | Immune
> Immunocompromised | Regulatory partnership
> With other healthcare advocates | Over 100,000 | International | Regularly | 119074504996 |
| Affiliated with the Vlaams Patiëntenplatform [Flemish Patients' Platform] and Kom op Tegen Kanker [Stand Up to Cancer]. | Cancer
> Cancer: breast | Regulatory partnership
> With other healthcare advocates | 1,000 | Regional | Rarely | 115020713219 |
| Advisory board member at Kom op tegen Kanker [Kom op tegen Kanker – Fight Against Cancer]. | Cancer
> Cancer: breast | Regulatory partnership
> With other healthcare advocates | 100 | Regional | Rarely | 115036847346 |
| Providing advisory input on legislative work concerning involuntary psychiatric admissions [Belgium]. | Mental health
> Mental health: carers, family, friends | Impacting policy and legislation
> Influence healthcare policy and legislation | 1,000 | Regional | Regularly | 115056630689 |
| Regional discussion on the cardiovascular prevention plan, with outreach to municipalities and CPAS [Centre Public d'Action Sociale – Public Centre for Social Welfare]. | Cardiovascular
> Cardiovascular: most types | Impacting policy and legislation
> Participate in public hearings and consultations | 100,000 | National | Regularly | 115042996911 |
| Roundtable discussions in parliament and visits to ministers’ offices. | Cancer
> Cancer: gynaecological | Impacting policy and legislation
> Participate in public hearings and consultations | 1,000 | National | Rarely | 115045208576 |
| EMA [European Medicines Agency] PCWP [Patients' and Consumers' Working Party] Forum at EU Parliament activities in our members' countries. | Immune
> Immunocompromised | Impacting policy and legislation
> Participate in public hearings and consultations | Over 100,000 | International | Regularly | 119074504996 |
| Hearing before the Belgian Senate – 24 November 2023. | Blood
> Sickle cell disease | Impacting policy and legislation
> Mobilise parliamentarians and political leaders | Do not know | National | Sometimes | 115035784218 |
| Providing advisory input on legislative work concerning involuntary psychiatric admissions. | Mental health
> Mental health: carers, family, friends | Impacting policy and legislation
> Advocate for patient protection bills and rights | 1,000 | Regional | Regularly | 115056630689 |
| In its newsletter No. 71 of November 2024, BCC [Belgian Brain Council - Conseil Belge du Cerveau] expressed its support for the statement issued by the Alzheimer Europe association in response to the EMA [European Medicines Agency]'s refusal to grant a marketing authorisation for Leqembi (lecanemab) for the treatment of mild cognitive impairment (memory and thinking disorders). | Mental health
> Mental health: most conditions | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 1,000 | International | Sometimes | 115006691079 |
| A legislative anomaly exists with regard to the funding of self-catheterisation for individuals residing in a residential care facility. | Neurological
> Multiple sclerosis | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 5,000 | Regional | Rarely | 115028407747 |
| … certain medications are reimbursed for women with breast cancer but not for men with the same condition. | Cancer
> Cancer (male): breast | Impacting policy and legislation
> Addressing barriers/anomalies in medical care | 100 | Regional | Sometimes | 115031895194 |
| We are calling for improved reimbursement of our medications. | Gastrointestinal
> IBD | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 100,000 | Regional | Sometimes | 115020038862 |
| Ensuring reimbursement for specific medicines. | Respiratory
> COPD | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 5,000 | Regional | Sometimes | 115029939063 |
| Through our association OntmoetPijn, we are a member of the Flemish Pain League, where we actively advocate on behalf of people living with chronic pain — including, for example, issues relating to the cost of medication. | Neurological
> Pain | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 100 | Regional | Sometimes | 115046494165 |
| VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform] participates as a patient organisation in consultative platforms addressing key bottlenecks, such as reimbursement and temporary unavailability of medicines. Pricing policy is also covered within this remit. Through the ELZ [Eerstelijnszone – Primary Care Zone] P-Zon [Personen met een Zorg- en OndersteuningsNood - People with a Care and Support Need], we additionally ensure the patient voice is represented within the P-Zon cluster. | Kidney
> Kidney diseases | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 100 | Regional | Sometimes | 115055534359 |
| Request for medication reimbursement. | Cancer
> Cancer: blood | Pricing and affordability advocacy
> Advocate for fair medicine pricing | 1,000 | Regional | Sometimes | 115057073683 |
| Completing the RIZIV [Rijksinstituut voor ziekte- en invaliditeitsverzekering – National Institute for Health and Disability Insurance] questionnaire in order to obtain reimbursement for medicines. | Respiratory
> COPD | Pricing and affordability advocacy
> Engage in price-review board negotiations | 5,000 | Regional | Sometimes | 114997831407 |
| An intervention was made in 2015 through the mutual health insurers at INAMI [Institut national d'assurance maladie-invalidité – National Institute for Health and Disability Insurance] to amend the reimbursement conditions for Imitrex SC [subcutaneous injection - used to quickly treat acute migraine attacks and cluster headaches in adults]. | Neurological
> Migraine | Pricing and affordability advocacy
> Engage in price-review board negotiations | 100 | National | Rarely | 115006822909 |
| Reimbursement applications for certain medicines through INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance]. | Rheumatic
> Lupus | Pricing and affordability advocacy
> Engage in price-review board negotiations | 100 | National | Regularly | 115029783188 |
| Advisory board of RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance] in connection with applications for reimbursement modalities for new medicines. | Bleeding
> Bleeding disorders: most types | Pricing and affordability advocacy
> Engage in price-review board negotiations | 5,000 | National | Rarely | 115049435993 |
| VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform] participates as a patient organisation in consultative platforms addressing key bottlenecks, such as reimbursement and temporary unavailability of medicines. Pricing policy is also covered within this remit. Through the ELZ [Eerstelijnszone – Primary Care Zone] P-Zon [Personen met een Zorg- en OndersteuningsNood - People with a Care and Support Need], we additionally ensure the patient voice is represented within the P-Zon cluster [atient participation cluster within a Flemish primary-care network]. | Kidney
> Kidney diseases | Pricing and affordability advocacy
> Engage in price-review board negotiations | 100 | Regional | Sometimes | 115055534359 |
| Recommendation submitted to the CTG [Commissie Tegemoetkoming Geneesmiddelen – Drug Reimbursement Committee] via a completed questionnaire: reimbursement of Buccolam for individuals with epilepsy aged 18 years and over. | Neurological
> Epilepsy | Pricing and affordability advocacy
> Engage in price-review board negotiations | 1,000 | Regional | Sometimes | 115057861541 |
| Completing the RIZIV [Rijksinstituut voor ziekte- en invaliditeitsverzekering – National Institute for Health and Disability Insurance] questionnaire in order to obtain reimbursement for medicines. | Respiratory
> COPD | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 5,000 | Regional | Sometimes | 114997831407 |
| Medications that are essential for the provision of quality palliative care are reviewed by us and designated for mandatory availability in local pharmacies. | Chronic
> Palliative | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 1,000 | Regional | Sometimes | 115002049927 |
| Reimbursement applications for certain medicines through INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance]. | Rheumatic
> Lupus | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | National | Regularly | 115029783188 |
| Ensuring reimbursement for specific medicines. | Respiratory
> COPD | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 5,000 | Regional | Sometimes | 115029939063 |
| Equal treatment for women and men with breast cancer. Certain medications are reimbursed for women with breast cancer but not for men with the same condition. | Cancer
> Cancer (male): breast | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | Regional | Sometimes | 115031895194 |
| HPV [Human Papillomavirus] vaccination reimbursed for boys up to the age of 18. | Cancer
> Cancer: HPV | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 1,000 | National | Sometimes | 115051943511 |
| VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform] participates as a patient organisation in consultative platforms addressing key bottlenecks, such as reimbursement and temporary unavailability of medicines. Pricing policy is also covered within this remit. Through the ELZ [Eerstelijnszone – Primary Care Zone] P-Zon [Personen met een Zorg- en OndersteuningsNood - People with a Care and Support Need], we additionally ensure the patient voice is represented within the P-Zon cluster. | Kidney
> Kidney diseases | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 100 | Regional | Sometimes | 115055534359 |
| Request for medication reimbursement. | Cancer
> Cancer: blood | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 1,000 | Regional | Sometimes | 115057073683 |
| Recommendation submitted to the CTG [Commissie Tegemoetkoming Geneesmiddelen – Drug Reimbursement Committee] via a completed questionnaire: reimbursement of Buccolam for individuals with epilepsy aged 18 years and over. | Neurological
> Epilepsy | Pricing and affordability advocacy
> Advocating for inclusion of product in reimbursement lists/national formularies | 1,000 | Regional | Sometimes | 115057861541 |
| [Advocate] for greater availability of well-maintained public restroom facilities, and for the establishment of a national Inflammatory Bowel Disease (IBD) awareness day. | Gastrointestinal
> IBD | Pricing and affordability advocacy
> Engaging in awareness campaigns | 100,000 | Regional | Sometimes | 115020038862 |
| Medications that are essential for the provision of quality palliative care are reviewed by us and designated for mandatory availability in local pharmacies. | Chronic
> Palliative | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 1,000 | Regional | Sometimes | 115002049927 |
| [Advocate] for greater availability of well-maintained public restroom facilities, and for the establishment of a national Inflammatory Bowel Disease (IBD) awareness day. | Gastrointestinal
> IBD | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100,000 | Regional | Sometimes | 115020038862 |
| Reimbursement of PrEP [Pre-Exposure Prophylaxis] for community-based organisations. | General health
> Sexual health: other | Improving access pathways
> Facilitate equitable access to medicines/healthcare | 100 | Regional | Sometimes | 115046432045 |
| HPV [Human Papillomavirus] vaccination reimbursed for boys up to the age of 18. | Cancer
> Cancer: HPV | Improving access pathways
> Advocate for wider vaccine access | 1,000 | National | Sometimes | 115051943511 |
| Our association is an active member of various associations and organisations that regularly participate in advisory committees on this topic [drug pricing] (e.g. RaDiOrg, Rare Disorders Belgium & ERN [European Reference Network] Transplantchild). | Rare
> Rare diseases: children/young people | Improving access pathways
> Improving access to rare/ultra-rare therapies | 100 | International | Sometimes | 115037392949 |
| Since the introduction of a patient advisory process for the CTG [College Tarieven Gezondheidszorg - Healthcare Tariffs Authority] procedure in early 2025, we have compiled a submission dossier on two occasions. | Rare
> Cystic fibrosis | Evidence-based patient input
> Use patient insights to inform decisions | 1,000 | National | Sometimes | 115005093988 |
| [Patient] expert assessments in support of drug reimbursement decisions. | Neurodegenerative
> Dementia | Evidence-based patient input
> Use patient insights to inform decisions | Do not know | Regional | Sometimes | 115043013133 |
| We represent the patient voice to mutual health insurance funds and within European consortia. | Medical research
> Medical Research | Evidence-based patient input
> Use patient insights to inform decisions | 100 | National | Rarely | 115057856231 |
| Input from the patient organisation on reimbursement dossiers for new medications (via an extensive questionnaire). | Cancer
> Cancer: lung | Evidence-based patient input
> Conduct surveys/research to generate data | 1,000 | Regional | Sometimes | 115039053506 |
| Since the introduction of a patient advisory process for the CTG [College Tarieven Gezondheidszorg - Healthcare Tariffs Authority] procedure in early 2025, we have compiled a submission dossier on two occasions. | Rare
> Cystic fibrosis | Evidence-based patient input
> Translate evidence and insights into policy input | 1,000 | National | Sometimes | 115005093988 |
| Regional discussion on the cardiovascular prevention plan, with outreach to municipalities and CPAS [Centre Public d'Action Sociale – Public Centre for Social Welfare]. | Cardiovascular
> Cardiovascular: most types | Diagnosis and medicines delivery
> Support screening and early detection | 100,000 | National | Regularly | 115042996911 |
| Working group on the new rare diseases plan, and various other working groups, committees, and similar bodies. | Rare
> Rare diseases: most types | Institutional governance
> Ensure representation within governmental advisory bodies | We do not communicate with patients directly | National | Regularly | 115005882213 |
| At RIZIV [Rijksinstituut voor Ziekte- en Invaliditeitsverzekering – National Institute for Health and Disability Insurance], among other bodies. | Cancer
> Cancer: blood | Institutional governance
> Ensure representation within governmental advisory bodies | 1,000 | Regional | Regularly | 115010762888 |
| Through the Luss [Ligue des Usagers des Services de Santé – League of Health Service Users], which brings together several patient associations and has a member sitting on the Drug Reimbursement Committee at the INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance]. | Blood
> Sickle cell disease | Institutional governance
> Ensure representation within governmental advisory bodies | Do not know | National | Rarely | 115028443749 |
| Our association is an active member of various associations and organisations that regularly participate in advisory committees on this topic [drug pricing] (e.g. RaDiOrg, Rare Disorders Belgium & ERN [European Reference Network] Transplantchild). | Rare
> Rare diseases: children/young people | Institutional governance
> Ensure representation within governmental advisory bodies | 100 | International | Sometimes | 115037392949 |
| Member of the steering committee for the national and regional plan. | HIV
> HIV and sexual health | Institutional governance
> Ensure representation within governmental advisory bodies | 100,000 | Regional | Sometimes | 115048515283 |
| On occasion, a subject-matter expert contributes through our overarching collaborative platform. | Rheumatic
> Rheumatoid arthritis | Institutional governance
> Working effectively within multi-stakeholder networks | 1,000 | Regional | Sometimes | 114998593281 |
| Working group on the new rare diseases plan, and various other working groups, committees, and similar bodies. | Rare
> Rare diseases: most types | Institutional governance
> Working effectively within multi-stakeholder networks | We do not communicate with patients directly | National | Regularly | 115005882213 |
| I participate in the Observatoire des Maladies Chroniques [Observatory for Chronic Diseases] and in the work of the LUSS [Ligue des Usagers des Services de Santé – League of Health Service Users] (the umbrella body for patient associations), both of which address these subject areas. | Neurodegenerative
> Huntington’s disease | Institutional governance
> Working effectively within multi-stakeholder networks | 1,000 | National | Regularly | 115007525885 |
| We participate in stakeholder engagement sessions organised by Pharma.be and FAGG [Federaal Agentschap voor Geneesmiddelen en Gezondheidsproducten – Federal Agency for Medicines and Health Products]. | Blood
> Blood disorders: ITP | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | National | Sometimes | 115021567311 |
| Through the Luss [Ligue des Usagers des Services de Santé – League of Health Service Users], which brings together several patient associations and has a member sitting on the Drug Reimbursement Committee at the INAMI [Institut National d'Assurance Maladie-Invalidité – National Institute for Health and Disability Insurance]. | Blood
> Sickle cell disease | Institutional governance
> Working effectively within multi-stakeholder networks | Do not know | National | Rarely | 115028443749 |
| [Working with] LUSS [Ligue des usagers des services de santé – League of Healthcare Service Users]. | Neurological
> Fibromyalgia | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | National | Sometimes | 115028484320 |
| Patient expert for rare diseases, pharmaceutical companies, and other associations. | Rare
> Rare diseases: kidney | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | National | Regularly | 115028704257 |
| Our association is an active member of various associations and organisations that regularly participate in advisory committees on this topic (e.g. RaDiOrg, Rare Disorders Belgium & ERN [European Reference Network] Transplantchild). | Rare
> Rare diseases: children/young people | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | International | Sometimes | 115037392949 |
| VPP [Vlaams Patiëntenplatform - Flemish Patients’ Platform] participates as a patient organisation in consultative platforms addressing key bottlenecks, such as reimbursement and temporary unavailability of medicines. Pricing policy is also covered within this remit. Through the ELZ [Eerstelijnszone – Primary Care Zone] P-Zon [Personen met een Zorg- en OndersteuningsNood - People with a Care and Support Need], we additionally ensure the patient voice is represented within the P-Zon cluster. | Kidney
> Kidney diseases | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | Regional | Sometimes | 115055534359 |
| Patient consultation at AstraZeneca. | Cancer
> Cancer (male): breast | Institutional governance
> Working effectively within multi-stakeholder networks | 100 | Regional | Rarely | 115058978325 |
| Eligible to the EMA [European Medicines Agency] and invited to meetings and events, been part of regulatory evaluations. Member of EU HTA [Health Technology Assessment] stakeholder forum. | Neurodegenerative
> Huntington’s disease | Institutional governance
> Working effectively within multi-stakeholder networks | Do not know | International | Sometimes | 119075658991 |
| I am currently in the process of re-establishing the association, and once it is fully operational, that is the objective. | Skin
> Angioedema | Institutional governance
> Maintain formal status as public interest or charitable entity | 100 | National | Sometimes | 115043847394 |
| Equal treatment for women and men with breast cancer. | Cancer
> Cancer (male): breast | Upholding patient rights/improving quality of life
> Protecting/improving the patient experience | 100 | Regional | Sometimes | 115031895194 |
| Medications that are essential for the provision of quality palliative care are reviewed by us and designated for mandatory availability in local pharmacies. | Chronic
> Palliative | Upholding patient rights/improving quality of life
> Promoting an emphasis on quality of life | 1,000 | Regional | Sometimes | 115002049927 |
interactions
actions & advocacy
28 mentions
