Primary Sjögrens' Syndrome Patients Advisory Group

EULAR PARE and SSF - Sjögren's Syndrome Foundation have an advisory role in HarmonicSS and will continuously monitor and evaluate the project (outcomes) in terms of impact to patients. Also, EULAR PARE and SSF have a major role in the dissemination of the results to patient associations and the public.

To ensure that national Sjorgens Patient Associations are adequately involved, the Primary  Sjögrens' Syndrome Patients Advisory Group (pSS PAG) was established. This group will be consulted regularly and also mails will be send out to pSS groups and EULAR member PARE organisations.

This group will help to:

  • monitor, provide feedback and input on the project, focusing on the patients' perspectives and experience
  • develop thoughts related to overarching topics, e.g. state unmet needs in pSS from the patient advocacy community

Current members are:

  • Elsa Mateus, Advisory Group Coordinator
  • Mascha Osterbaan, Nationale Vereniging Sjögren Patiënten, Netherlands
  • Joyce Koelwijn-Tukker, Nationale Vereniging Sjögren Patiënten, Netherlands
  • Jenny Inga, AESS, Spain
  • Maggy Pincemin, ISN
  • Steven Taylor, SSF, US
  • Kathy Hammitt, SSF, US (also HarmonicSS EAB member)
  • Annabel Dawson, BSSA, UK (also HarmonicSS EAB member)
  • Ana Vieira, LCPDR, Portugal
  • Polina Pchelnikova, representative of the EULAR PARE Board and Russian EULAR member PARE organisation