48% of rheumatic disease patient groups report representing patient interests to regulators, with 24% participating in Health Technology Assessment (HTA) and reimbursement reviews. 22% advocate for equitable access to medicines or healthcare.
48% of respondents from Rheumatic diseases ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Rheumatic diseases sub-type
108 patient groups across 9 sub-types
interactions
The Hellenic League Against Rheumatism (ELEANA) regularly represents patient interests to national and European regulators through formal consultations, written submissions, participation in policy dialogues, and involvement in European patient advocacy platforms (e.g., EULAR [European Alliance of Associations for Rheumatology] PARE [People with Arthritis/Rheumatism in Europe], EPF [European Patients' Forum], GAfPA [Global Alliance for Patient Access]).
The Hellenic League Against Rheumatism (ELEANA) regularly represents patient interests to national and European regulators through formal consultations, written submissions, participation in policy dialogues, and involvement in European patient advocacy platforms (e.g., EULAR PARE, EPF, GAfPA). ELEANA contributes patient perspectives on access to treatments, reimbursement, unmet needs, and quality of life in autoimmune rheumatic diseases, both at national level (Greece) and at EU level.
National rheumatic-diseases patient group, Greece
interactions
We have recently completed IPT [Informes de Posicionamiento Terapéutico – Therapeutic Positioning Reports] assessments for Anifrolumab [for adults with moderate to severe, active autoantibody-positive systemic lupus erythematosus (SLE)] and Voclosporin [used to treat lupus nephritis].We are currently engaged in the IPT process for Obinutuzumab [used to treat specific blood cancers and active lupus nephritis].
Recientemente hemos realizado IPT de Anifrolumab y Voscloporina. Actualmente estamos inmersos en el IPT de Obinutuzumab.
National rheumatic-diseases patient group, Spain
actions & advocacy
The organisation advocates for the rights of patients living with rheumatic and autoimmune diseases, providing guidance on access to treatments through the SUS [Sistema Único de Saúde – Unified Health System], facilitating dialogue with healthcare professionals, and supporting awareness initiatives and public policy efforts focused on patient needs.
A organização atua na defesa dos direitos dos pacientes com doenças reumáticas e autoimunes, promovendo orientação sobre acesso a tratamentos pelo SUS, diálogo com profissionais de saúde e participação em iniciativas de conscientização e políticas públicas voltadas aos pacientes.
Local rheumatic-diseases patient group, Brazil
actions & advocacy
We engage annually with the government and the Storting [the Norwegian Parliament] regarding the national budget.
Årlig kontakt med regjering og storting angående statsbudsjett.
National rheumatic-diseases patient group, Norway
The percentages below highlight how the 50 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
28 mentions
12 mentions
6 mentions
5 mentions
4 mentions
1 mention
8 mentions
4 mentions
4 mentions
6 mentions
5 mentions
1 mention
5 mentions
4 mentions
1 mention
2 mentions
2 mentions
2 mentions
2 mentions
actions & advocacy
13 mentions
11 mentions
1 mention
1 mention
9 mentions
5 mentions
4 mentions
7 mentions
5 mentions
2 mentions
4 mentions
3 mentions
1 mention
1 mention
1 mention
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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
