and responsible for communication in APACS
The italian association for patients with EGPA decided to join Vasculitis Europe !
A wonderful opportunity to exchange EGPA specific information amongst countries.
We will work together closely to see if we can strengthen the Italian Vasculitis Community also in areas other than EGPA.
APACS website: https://apacs-egpa.
APACS Facebook page: https://www.facebook.com/ApacsEgpa
End of September 2017 the 3rd national vasculitis conference took place in Athens, Greece. For the first time, there was a conference session especially for vasculitis patients. Professor Dimitrios Vassilopoulos invited us to come over and share with them our experience in setting up and managing a vasculitis patient organisation, like we did in the United Kingdom and The Netherlands.
Right after the conference we got together with Athanasia Pappa, president of the Hellenic League Against Rheumatism (ELEANA) and her vice-president Katerina Tsekoura. Both ladies ensured us that ELEANA is keen to act as the host for patients suffering from vasculitis and that ELEANA is making a real effort to strengthen and expand this patient advocacy group.
And of course they decided to join Vasculitis Europe.
welcome Athanasia and Katerina,
welcome Greece !
Welcome Ireland !!
Vasculitis Ireland Awareness joined our Vasculitis Europe.
Julie Power, chair of VIA stated:
I would be delighted to become involved with this initiative, I am a strong believer in combining knowledge to the common gain, and this can only be good for us living with a ‘rare’ disease.
We are looking forward to a wonderful and long-lasting relationship.
Welcome Julie, welcome VIA, welcome Ireland !
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 !
An important milestone in the history of EU healthcare has been marked in Vilnius, Lithuania, 9-10 March 2017.
The European Reference Networks Conference & ERN Kick-off meeting was held in the home country of Commissioner Vytenis Andriukaitis, and opened by the president of the European Commission Jean-Claude Juncker.
24 European Reference Networks (ERNs) dealing with rare and low prevalence complex medical conditions were officially launched during this conference.
One of the 24 networks is called RITA and deals with there main areas:
John and Peter encourage all European (and British) Vasculitis Patient Groups to get in touch with them and to become part of this extremely important European network. Simply send them a brief e-mail :
What does BREXIT means for our federation?
Looking at ANCA Associated Vasculitis we see more PR3-ANCA than MPO-ANCA in the northern european countries while we see the opposite in the southern countries. There are many more Behçet patients in Turkey than in The Netherlands and Takayasu is much more common in Japan than in Europe.
In other words: vasculitis has its own geographical characteristics and it does not care about political borders. And therefore we don't !
Patients in non-EU countries are as dear to us as those in the European Union. We have no political agenda. Whether The United Kingdom is part of the EU or not, we will do everything to support vasculitis in that area and we will collaborate and share information with every single patient support group, hospital or institution able and willing to do so.
But yes, BREXIT does have a certain impact on us. We strongly believe in collaboration and sharing information and we are now more determined than ever to make this federation a succes. Without any political or economic agenda. Showing the world that we are just people trying to help people, collaborating to make us stronger.
EUROPEAN REFERENCE NETWORKS
One of the most interesting healthcare projects going on in Europe is about European Reference Networks for rare diseases (ERN's). If at least 10 hospitals from at least 8 different countries decide to join forces they can establish a ERN for a particular group of rare diseases.
RARE AUTOIMMUNE AND AUTO-INFLAMMATORY DISEASES
Since there are between 6000 and 8000 rare diseases, a certain way of grouping was needed. Therefore 21 groups have been created. Vasculitis is a systemic disease so there has been a bit of discussion on which group is best suited to host vasculitis. There seem to be consensus now that this is the group called: Rare Autoimmune and Autoinflammatory Diseases.
One of the requirements to apply for an ERN is that the ERN should be 'patient centered'. So hospitals have to prove that they involve patient organizations in the process of establishing and running them. For that purpose EURORDIS also created so called European Patient Advocacy Groups (e-PAGs) to work with and alongside the ERNs. Both the UK and NL organisations are therefore working closely together with several European academic hospitals to make all this happen. We will keep you posted...