The EUROPLAN Project

An initiative to support national strategies and plans for rare diseases in all EU Member States.

• a. Process rather than a project
• b. EUROPLAN national Conferences
• c. EUROPLAN II

a. A process rather than a project

The EUROPLAN project, co-funded by the EC Programme for Public Health 2008-2013, was designed to support the efforts of national authorities to develop public health strategies on rare diseases throughout Europe and to make sure that they follow common guidelines.

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.

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:

• the Commission Communication on Rare Diseases,
• the Council Recommendation on an action in the field of rare diseases
• the “EUROPLAN recommendations”
• ultimately to help the rare disease community to take the necessary steps towards outlining high quality national plans or strategies on rare diseases.

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 II”

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 II” 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 and 2013.

“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.”