Last year, Inês Ribeiro from Portugal took the lead in organising a beautiful campaign which many of our members translated and replicated during the entire month of May. This initiative was a great success, and will be replicated again this year. To ensure its success, we are now seeking your support to identify 30 facts about lupus, so that we replace most of last year’s by new statements which bring knowledge, support and hope to the cause of people with lupus. Please send your proposed simple facts to Inês (ines.ribeiro.simoes@gmail.com) by March 20th at the latest. Ines will then be able to distribute English language materials by April 15th for your use during the month of May.

In early February, the European Reference Network on Rare and Complex Connective Tissue Diseases met in Pisa for 3 days of collaboration. Under Marta Mosca’s lead, some 60 delegates finalised the outcomes of the ERN’s first year of activities, and worked together on the action plan for the 2^nd year, where many projects will operate in parallel. Over the next 12 months, the role of patients will be critical, in co-working many workstreams with professors and researchers specialised in the field.
 
The ERN’s objective is that patients with rare and complex conditions will benefit from the best treatment and advice available in the EU, by creating a pool of specialised health care professionals from all over Europe. They will share knowledge and help each other in complex situations through web collaboration. Thanks to this, it will be the information that will travel, rather than patients, facilitating access to diagnosis, treatment and high-quality healthcare. Educational programmes for patients and families, Improved therapeutic protocols, new guidelines and quality measures, and greater patient involvement are also priorities.
 
Doctor Fara Tamirou, the brilliant young doctor leading the Lupus workstream under guidance of Professor Nathalie Costedoat, shared the results of her analysis. She identified 2,096 publications with regards to lupus that were screened by the 18 participating Centers. From these, they could extract 16 Clinical practice guidelines that could form the base for explicit recommendations on best management of lupus. This work also allowed the identification of several areas of unmet needs, where no clinical guidelines have been formulated yet, despite the significant needs of patients and practitioners. As a next step, a publication of identified guidelines will be organised, validation and dissemination of best practices will start, while existing and new data will be reviewed to seek adoption of new ERN recommendations.
 
The ERN work is very patient inclusive. Within ReCONNET, we identified 20 patient support roles of which about 1/3rd would be people living with lupus. The work will involve collecting information, bringing ideas, reviewing workpapers, working with doctors to share patient views, … in areas such as the dissemination of Clinical Guidelines, creating lay versions, patient’s education, Research on unmet needs.
 
The one finding that struck me the most in the meeting was the result of 2 surveys, one among the participating doctors, which highlighted the main difficulties they face in the implementation of existing guidelines (1) procedure/drug reimbursement (57%!), (2) time limit (48%) and (3) legislative environment (34%)! A survey (still in process at the time of the meeting) identified that 90% of patients and families would like Lifestyle guidelines on matters such as food, exercise, work or pregnancy, …

Over the next year, there will be much involvement needed by the patient community to deliver the ERN objectives. Together with the doctors and health care professionals, we can make a lasting and very significant difference, but that will require everybody’s support. So please, whenever you see a request from the ERN, give it your prompt attention, and offer your best support. 

Alain Cornet