RARE-Bestpractices Patient Advisory Council

Rare Best Practices logoRARE-Bestpractices is a project funded by the European Union under the FP7 Cooperation Work Programme, that brings together a team of high level experts in the areas of clinical practice guidelines, systematic review, health technology assessment, health policy, rare disease epidemiology and public health, to develop a sustainable networking platform for sharing best practices for the management of rare diseases. EURORDIS acts as a transversal partner in the RARE-Bestpractices project, ensuring the involvement and capacity-building of patient organisations across Europe.

To ensure patient representation in the project activities, a RARE-Bestpractices Patient Advisory Council has been established. The role of this Council (PAC-RBP) is to advise on overall activities of the RARE-Bestpractices project, to inform project partners of issues important to patients and to guarantee a patient-centric approach throughout the project.

This group contributes the patient perspective to the issues raised by the development and the dissemination of trustworthy guidelines and standards for the care of rare diseases in Europe.

The PAC-RBP is currently composed of 11 volunteer patient representatives and is led and supported by EURORDIS staff member Juliette Senecat, Health and Social Projects Manager.

  • Angelo Petroni, Angeli Noonan, Associazione Italiana Sindrome di Noonan Onlus, Italy
  • Avril Kennan, DEBRA Ireland, Ireland
  • Barbara Poli, Aniridia Europe, Italy
  • Danijela Szili, Rett Syndrome Europe, Hungary
  • Geske Wehr, European Network for Ichthyosis; EURORDIS Board of Directors, Germany
  • Jean Benard, ASL-HSP France, France
  • Marleen Kaatee, PSC Patients Europe, Netherlands
  • Melanie Meniar, Waldenstrom Europe, Netherlands
  • Nicola  Whitehill, Rare Disease UK, United Kingdom
  • Peter Verhoeven, Vasculitis Stichting, Netherlands
  • Pisana Ferrari, PHA Europe - European Association for Pulmonary Hypertension, Italy

Page created: 05/09/2016
Page last updated: 05/09/2016
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases