EUROPLAN was conceived to accompany European national authorities in the design and implementation of rare disease plans or strategies in line with the Commission Communication on Rare Diseases and the Council Recommendation on an action in the field of rare diseases.
a. A process rather than a project
Between 2008 and 2011, EUROPLAN partners developed a “Guidance document”(or ‘EUROPLAN recommendations’) for the definition and implementation of National Plans and Strategies for rare diseases”, as well as a set of indicators for monitoring and evaluating the implementation of national actions.
The project’s remit goes well beyond the delivery of documents. EUROPLAN in fact is “not so much a project, it is rather a process”, as described by the project leader, Dr. Domenica Taruscio, Director of the Italian Centre for Rare Diseases.
This process involves all stakeholders to stimulate discussion, reach a consensus and generate a momentum on National Plans for structuring all relevant actions in the field of rare diseases. The patients’ advocates play an important role to:
voice the patients’ views
be considered as equal partners
The organisation of National Conferences by National Alliances of rare disease patients in 15 EU Countries has been instrumental in making EUROPLAN a highly inclusive process.
1 April 2008 – Project started
18 November 2008 – Conference “National Strategies and Plans for Rare Diseases in Europe”, under the aegis of the EU Presidency (France), EURORDIS and EUROPLAN, in Paris, France
February 2010 – EUROPLAN Indicators finalised
13 May 2010 – Workshop with national authorities to discuss the EUROPLAN Recommendations in Krakow, Poland
May 2010 to January 2011 – National Conferences on Rare Diseases
February 2011 – EUROPLAN Recommendations finalised
25 February 2011 – Final International Conference in Rome, Italy
b. The EUROPLAN National Conferences
“The first 15 EUROPLAN National Conferences were the opportunity for all key stakeholders to sit around the same table and work together to tackle the main issues and find a common ground,” says Valentina Bottarelli, Public Affairs Advisor at EURORDIS and Coordinator of the EUROPLAN Conferences.
The National Conferences were organised to promote:
EURORDIS National Alliances, organisers of the National Conferences, had the clear mandate to involve all relevant national stakeholders in the field of RDs.
EURORDIS ensured the overall coordination, working with 6 Advisors selected among engaged patient representatives active within their National Alliance. With each of them responsible for supervising 2 or 3 National Conferences, the Advisors ensured a closer touch with the national situations.
Each participating country produced a final conference report, which fed into a Synthesis Report.
c. “EUROPLAN 2012 - 2015”
The conferences helped to build up the momentum needed to hatch a new strategy or bring together all existing initiatives into one National Plan. Stakeholders involved in National Conferences shared the feeling that momentum should not be lost as it is necessary to build the next phase of work.
“We cannot change the world in one day but for those countries that are starting to tackle the challenges of rare diseases, the EUROPLAN conferences have been incredibly positive,” said Mirjam Mann, from ACHSE and a EURORDIS-EUROPLAN Advisor. “Those countries, like Germany, who are further along that path, will now need to discuss more specific best practices in each area of intervention.”
“This is just the end of the first step of EUROPLAN”, continued Antoni Montserrat from the European Commission at the EUROPLAN Final conference in Rome. “We need to consolidate what has been created, which is strong.”
This is why another series of EUROPLAN Conferences is being prepared. “EUROPLAN 2012 - 2015” will thrive in the broader context of the Joint Action for Rare Diseases and include up to 20 countries.
EURORDIS has extended the process to countries not involved in the first phase, but also to provide support to those countries where there is a clear need to reinforce the process with a second conference.
The new National Conferences take place in 2012, 2013 and 2014.
“I hope that even beyond 2013, after plans have been established, we will all continue on a strong and solid base” said Yann Le Cam, CEO of EURORDIS. “The actions we will undertake together at a European level –he continued- through the first years of national plans are the building block for the future of rare disease in Europe.”
For more information on the EUROPLAN project, please visit the EUROPLAN website.