Of the 63 patient groups from bleeding disorders, 67% represent patient interests to drug regulators. The most common form is attending meetings with policymakers/regulators (23%). When advocating patient groups concentrate on access and pricing/reimbursement.
67% of respondents from Bleeding disorders ‘Regularly’ or ‘Sometimes’ represent patient interests to drug regulators
Patient groups representing each Bleeding disorders sub-type
63 patient groups across 3 sub-types
interactions
Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood].
Teilnahme im G-BA, RKI, Arbeitskreis Blut.
National bleeding-disorders patient group, Germany
interactions
The Federation participates in dialogue and collaboration forums with institutions within Mexico's healthcare system — including IMSS [Instituto Mexicano del Seguro Social – Mexican Social Security Institute], ISSSTE [Instituto de Seguridad y Servicios Sociales de los Trabajadores del Estado – Institute for Social Security and Services for State Workers], and other health authorities — to give voice to the needs of people living with coagulation disorders.
La Federación participa en espacios de diálogo y colaboración con instituciones del sistema de salud en México, como el IMSS, ISSSTE y otras autoridades sanitarias, para expresar las necesidades de las personas que viven con trastornos de la coagulación. A través de estas colaboraciones se comparten experiencias de pacientes, se identifican barreras de acceso al tratamiento y se promueven mejoras en los modelos de atención. Asimismo, la Federación participa en reuniones, consultas y proyectos colaborativos que buscan fortalecer el acceso oportuno a medicamentos y terapias innovadoras para la comunidad.
National bleeding-disorders patient group, Mexico
actions & advocacy
We are constantly vigilant in ensuring that the pharmaceutical industry sells its products at international prices and does not exceed those price thresholds — in other words, we engage in civic oversight to verify proper compliance and prevent any irregularities, in order to safeguard our annual state budget.
Estamos siempre pendientes que la industria venda sus productos al precio internacional y no se extralimite en el precio, es decir, hacemos veeduría ciudadana en que se aplique bien y no haya suspicacia, para cuidar nuestro presupuesto estatal cada año.
National bleeding-disorders patient group, Ecuador
actions & advocacy
The first procurement and registration of factor VIII in our country was made possible through the efforts of our organisation in collaboration with the IGSS [Instituto Guatemalteco de Seguridad Social – Guatemalan Social Security Institute].
La primera compra y registro de factor VIII en nuestro país fue gracias al trabajo realizado por nuestra organización con el IGSS, Instituto Guatemalteco de Seguridad Social.
National bleeding-disorders patient group, Guatemala
The percentages below highlight how the 35 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
19 mentions
8 mentions
7 mentions
3 mentions
1 mention
8 mentions
7 mentions
1 mention
6 mentions
5 mentions
1 mention
2 mentions
2 mentions
1 mention
1 mention
1 mention
1 mention
actions & advocacy
10 mentions
8 mentions
1 mention
1 mention
5 mentions
4 mentions
1 mention
3 mentions
2 mentions
1 mention
2 mentions
2 mentions
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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
