
In april 2017, 24 different European Reference Networks were launched.
The most important one for vasculitis patients is RITA. The RITA ERN deals with primary immunodeficiencies, auto inflammatory and autoimmune diseases like vasculitis.
Prof. Andrew Cant from the Great North Children's hospital in Newcastle-on-Tyne heads up the RITA network and there is a project leader for each of the three arms. There is also a patient representative for each arm. The autoimmune arm is chaired by prof. dr. Mark Little from the Trinity hospital in Dublin. The patient representative for the autoimmune group is Peter Verhoeven.
Within RITA, eleven workgroups were created and all key players (jointly referred to as the RITA council) met in Amsterdam on the 10th of May 2017
The 11 workgroups (WG) are: Education, Guidelines/Recommendations, Registries/Biobanks, Molecular Testing, IT/e-Health, Stem Cell and Gen Therapy, Transition Care, Communications, Patiënt Advocacy, Pharmacovigilance and Research.
Like all work groups the WG 'Patient Advocacy' covers all three arms. The WG is chaired by Peter Verhoeven from the from the Dutch vasculitis foundation and co-chaired by Leire Solis from IPOPI. Other members are Richard West from Behçet International, John Mills from Vasculitis UK, Diana Marinello from SIMBA Italy and Malena Vetterli from FMF & AID Switzerland. The group will expand as they move on.
This WG already had some informal videoconferences but the official kick off conference was held on July 13th. The main agenda item was the 'Terms of Reference' for this group. A first draft was discussed and we will update you here as soon as they are ready and published.
Getting interested already and feel like actively participating in vasculitis.eu or RITA? e-mail Peter !
The most important one for vasculitis patients is RITA. The RITA ERN deals with primary immunodeficiencies, auto inflammatory and autoimmune diseases like vasculitis.
Prof. Andrew Cant from the Great North Children's hospital in Newcastle-on-Tyne heads up the RITA network and there is a project leader for each of the three arms. There is also a patient representative for each arm. The autoimmune arm is chaired by prof. dr. Mark Little from the Trinity hospital in Dublin. The patient representative for the autoimmune group is Peter Verhoeven.
Within RITA, eleven workgroups were created and all key players (jointly referred to as the RITA council) met in Amsterdam on the 10th of May 2017
The 11 workgroups (WG) are: Education, Guidelines/Recommendations, Registries/Biobanks, Molecular Testing, IT/e-Health, Stem Cell and Gen Therapy, Transition Care, Communications, Patiënt Advocacy, Pharmacovigilance and Research.
Like all work groups the WG 'Patient Advocacy' covers all three arms. The WG is chaired by Peter Verhoeven from the from the Dutch vasculitis foundation and co-chaired by Leire Solis from IPOPI. Other members are Richard West from Behçet International, John Mills from Vasculitis UK, Diana Marinello from SIMBA Italy and Malena Vetterli from FMF & AID Switzerland. The group will expand as they move on.
This WG already had some informal videoconferences but the official kick off conference was held on July 13th. The main agenda item was the 'Terms of Reference' for this group. A first draft was discussed and we will update you here as soon as they are ready and published.
Getting interested already and feel like actively participating in vasculitis.eu or RITA? e-mail Peter !