39% of neurological patient groups report representing patient interests “regularly” or “sometimes”, with 16% participating in Health Technology Assessment (HTA) and reimbursement reviews. 22% advocate for equitable access to healthcare.
39% of respondents from Neurological ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Neurological sub-type
163 patient groups across 11 sub-types
interactions
Although ABEM [Associação Brasileira de Esclerose Múltipla – Brazilian Multiple Sclerosis Association] does not participate directly in medicine pricing decisions — which in Brazil are conducted by CMED [Câmara de Regulação do Mercado de Medicamentos – Chamber for Medicines Market Regulation] — the organisation contributes to the public and institutional debate on treatment access, availability, and sustainability, bringing the perspective of people living with multiple sclerosis and their…
National neurological-conditions patient group, Brazil
interactions
Multiple Sclerosis South Africa (MSSA) represents patient interests by advocating for access to affordable, effective MS treatments and by contributing the patient voice to policy, access, and reimbursement discussions. While MSSA does not set or negotiate drug prices, we engage with regulators, policymakers, and advisory bodies to highlight the real-world impact of pricing and access decisions on people living with MS, particularly in a South African and broader African context.
Multiple Sclerosis South Africa (MSSA) represents patient interests by advocating for access to affordable, effective MS treatments and by contributing the patient voice to policy, access, and reimbursement discussions. While MSSA does not set or negotiate drug prices, we engage with regulators, policymakers, and advisory bodies to highlight the real-world impact of pricing and access decisions on people living with MS, particularly in a South African and broader African context. Our input is informed by lived experience, patient-reported challenges, and international collaboration through global MS networks, ensuring that patient needs, equity, and sustainability are considered in decision-making processes.
Regional neurological-conditions patient group, South Africa
actions & advocacy
We rally our community when there are ASM [Anti-Seizure Medication] shortages and to support price regulations for medication for patients with epilepsy.
We rally our community when there are ASM shortages and to support price regulations for medication for patients with epilepsy.
Local neurological-conditions patient group, Canada
actions & advocacy
In Chile, medicines for MS [Esclerosis Múltiple – Multiple Sclerosis] are dispensed through the GES [Garantías Explícitas en Salud – Explicit Health Guarantees scheme], which establishes the value of the benefit packages.
En Chile, los medicamentos de la EM se entregan a través del GES, el cual define un valor de las canastas.
National neurological-conditions patient group, Chile
The percentages below highlight how the 74 patient groups interact with regulators and advocate for patient interests. As respondents may be represented in more than one area, percentages may not total 100%.
interactions
31 mentions
12 mentions
11 mentions
4 mentions
3 mentions
1 mention
14 mentions
7 mentions
6 mentions
1 mention
9 mentions
4 mentions
2 mentions
2 mentions
1 mention
7 mentions
6 mentions
1 mention
4 mentions
4 mentions
2 mentions
2 mentions
actions & advocacy
26 mentions
11 mentions
8 mentions
4 mentions
2 mentions
1 mention
19 mentions
16 mentions
2 mentions
1 mention
15 mentions
7 mentions
3 mentions
3 mentions
2 mentions
2 mentions
1 mention
1 mention
GET THE REPORT
Our research covers 2,262 patient groups representing 100 countries and 45 therapy areas. The sample report shows you the depth of analysis for a single country or therapy area. To access any other reports, please get in touch.
Visit patient-view.com to gather more information or email: Alex Wyke, alexwyke@patient-view.com
