Patients’ Partnership WG

Information about the Patients’ Partnership WG

Patients’ Partnership

The main objectives of the Patients’ Partnership WG are the:

  • Involvement of rCTDs patients and patients’ representatives in the ERN ReCONNET
  • Empowerment of rCTDs patients and patients’ representatives

In order to reach these objectives, the Patients’ Partnership WG supports and manages, together with the ReCONNET Coordination Team, the activities of the Network related to patients’ empowerment and involvement. In particular, the WG:

  • Gathers and elaborate the unmet needs of the rCTDs patient community in order to ensure continuous information into the activities of the Network
  • Supports the identification of ePAG Advocates for the diseases not yet represented in the ERN ReCONNET ePAG group
  • Develops a patients’ involvement and empowerment strategy for the ERN ReCONNET
  • Plans, together with the ERN ReCONNET  Coordination Team, the integration of the ePAG Impact Assessment Framework into the ERN monitoring system
  • Collaborates with the ERN ReCONNET Disease Coordinators and WG Chairs to ensure the involvement of patients in the activities of the Disease Groups and of the WGs
  • Collaborates with the Education and Training WG to organise educational activities and prepare informative materials on rCTDs dedicated to patients, caregivers and family members
  • Promotes the ERN ReCONNET among the patients’ community
  • Maps the existing rCTDs patients’ organisations active in Europe

WG Chairs

Ana Vieira
(LPCDR – Liga Portuguesa Contra as Doenças Reumáticas)

Ana Vieira
(LPCDR – Liga Portuguesa Contra as Doenças Reumáticas)

Gerd Burmester
(Charité Universitätsmedizin Berlin)

Gerd Burmester
(Charité Universitätsmedizin Berlin)

APS Micheline Pha (APHP, Hôpital Pitié-Salpêtrière)
Jelena Blagojevic (AOU Careggi, Florence)
EDS Laura Damian (County Emergency Clinical Hospital Cluj)
Sabrina Paolino (IRCCS AOU San Martino – Genoa)
  IgG4-RDs   Cristina Pamfil (County Emergency Clinical Hospital Cluj)
Rossana Scrivo (AOU Policlinico Umberto I di Roma)
IIMs Louise Diederichsen (Rigshospitalet)
Lorenzo Cavagna (Foundation IRCCS Polyclinic San Matteo, Pavia)
MCTD Carmen Pizzorni (IRCCS AOU San Martino – Genoa)
Marzena Olesińska (National Institute of Geriatrics, Rheumatology and Rehabilitation)
RP Lisa Matthews (Relapsing Polychondritis Awareness and Support)
SLE Savino Sciascia (A.S.L. Torino – Hub S. Giovanni Bosco)
Elena Elefante (AOU Pisana)
SS Isabelle Peene (University Hospital Ghent)
Matilde Bandeira (Centro Hospitalar de Lisboa Norte, EPE)
SSc Serena Guiducci (AOU Careggi, Florence)
Gianluca Moroncini (AOU Ospedali Riuniti Umberto I – G.M. Lancisi-G. Salesi)
UCTD Vera Guimarães (LPCDR – Liga Portuguesa Contra as Doenças Reumáticas)
Silvia Piantoni (Civil Hospital – Brescia)
ePAGs Vera Guimarães (LPCDR – Liga Portuguesa Contra as Doenças Reumáticas)
Ilaria Galetti (Federation of european scleroderma associations, GILS)
Eva Collado (Asociación Nacional de Síndromes de Ehlers-Danlos, Hiperlaxitud y Colagenopatías – ANSEDH)
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