Meet the Spanish EUPATI National Platform
The EUPATI National Platform (ENP) in Spain brings together patient, academic and industry representatives who want to work in partnership to promote patient education and enhance patient involvement in the Spanish medicines research and development (R&D) process.
The National Platform is led by an Executive Committee – or a National Team – which shares information among members and grows the discussion around national patient involvement issues and opportunities. The Team meets regularly and provides ongoing management and administrative support to the Platform.
- Mercedes Maderuelo, Federation of Spanish Diabetics (FEDE)
- Óscar Prieto, Asociación de Afectados por Tumores Cerebrales en España (ASATE) & Grupo Español de Pacientes con Cáncer (GEPAC)
- Roberto Saldaña, Confederación de Asociaciones de Enfermos de Crohn y colitis ulcerosa de España (ACCU)
- Blanca Rubio, Asociación Madrileña de Lupus y Amigos (AMELyA)
- Nuria Zúñiga, Asociación Madrileña de Lupus y Amigos (AMELyA)
- Antonio Torralba, ConArtritis
- Teresa Bordons, Fundación Menudos Corazones
- David Trigos Herraez, Acción Psoriasis
- Sara Pérez, Universidad Complutense de Madrid
- Begonya Nafría Escalera, Hospital Sant Joan de Déu de Barcelona
- Daniel Gil, Farmaindustria
Our work to date
In 2013, EUPATI created the National Team in Spain with the support of representatives of the Federation of Spanish Diabetics (FEDE), Asociación de Afectados por Tumores Cerebrales en España & Grupo Español de Pacientes con Cáncer (GEPAC), Universidad Complutense de Madrid and Farmaindustria. After several months of outreach, the Spanish National Platform was launched on 04 November 2014 in Madrid at an event hosted by the Instituto de Mayores y Servicios Sociales (IMSERSO).
Following a welcome and strong response from patients locally, the Team has expanded to include representatives from the Confederación de Asociaciones de Enfermos de Crohn y colitis ulcerosa de España (ACCU), Asociación Madrileña de Lupus (AMELyA), ConArtritis, Fundación Menudos Corazones and the Hospital Sant Joan de Déu de Barcelona.
Eager to reach those directly involved across the medicines research and development process, the Team has initiated conversations with La Agencia Española de Medicamentos y Productos Sanitarios (La AEMPS) and the Red Nactional de Biobancos (BioNER). Across 2015, the Team presented EUPATI at the Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER), VIII Annual Conference of the Biomedical Research Technological Platforms, and III Congreso Nacional de Pacientes Crónicos SEMERGEN. The Team also participated in patient outreach days organised by Pfizer, MSD and Novartis to highlight various patient education and patient involvement issues.
Our future plans
Throughout 2016, we invite all national partners with an interest in patient education and patient involvement to join the EUPATI National Platform. We hope that patient, academic and industry representatives can work with government officials, regulatory bodies, health technology assessment agencies, associations of doctors and nurses, medical journalists, and many more, to better include patients across the medicines R&D process.
To prepare the way for greater patient involvement, the EUPATI National Platform provides patients with access to important information and education, including the new EUPATI Patient Advocate Toolbox and Online Library which can be adapted further to meet individual training and learning needs. The National Platform also engages with trainees from the 14-month EUPATI Patient Expert Course to see how they might move their knowledge from theory to practice and to explore how the course material might be shared with other patient communities.
Join the Spanish EUPATI National Platform
To connect with the Spanish National Platform, please use the contact form below or email the Team at ESfirstname.lastname@example.org.
By getting in touch, you can be involved in setting the Platform’s strategy around patient involvement, you can be kept informed of upcoming patient education and advocacy initiatives (conferences, workshops, trainings), and you can be linked up with like-minded national health partners.
Don’t leave without saying hello!