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
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases