The EUROPLAN Conferences

“Our country is wealthy enough to be able to take care of the most vulnerable,” said the President of the Republic of Croatia when opening the EUROPLAN Conference - one of the 15 Conferences being held across Europe. One of the main objectives of the EUROPLAN Project is to stimulate discussion, reach a consensus on the importance of, and generate a momentum on national plans for structuring all relevant actions in the field of rare diseases. “The 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.

EURORDIS’ role was to coordinate the work of the national alliances in all participating countries and ensure that the areas of work included in the EU Council Recommendation and Commission Communication on Rare Diseases, were addressed at all 15 conferences. Thus, all conferences followed the same structure and included sessions that corresponded to the following areas of intervention:

• Methodology and Governance of National Plans for Rare Diseases
• Definition, Codification and Inventorying of Rare Diseases
• Research on Rare Diseases
• Centres of Expertise, European Reference Networks, HealthCare Pathways, Cross Border Health Care, Standard of Diagnosis and Care, Newborn Screening, Quality Testing, Orphan Drugs and Provision of Treatments
• Patient Empowerment, Specialised Services, Integration in Social Services
• Gathering of Expertise on Rare Diseases at European level including on Information and Training, Clinical Added Value of Orphan Drugs
• Sustainability

Between June 2010 and January 2011, Conferences were held in Bulgaria, Denmark, Romania, France, Spain, Sweden, Italian, the Netherlands, Greece, Germany, Croatia, Hungary, Poland, UK and Ireland.

For many it was the opportunity to bring rare diseases to the attention of their political leaders and national authorities. In Germany a government representative said that they should include equal access to care for rare disease patients in a bill of rights. In Denmark the highest representative from the government’s Board of Health went from “we already have a policy on rare diseases” to “we now need a National Plan for Rare Diseases”. In Croatia, the conference added momentum to the work of the newly created National Rare Disease Steering Committee. In the Netherlands, rare diseases are now mentioned in the new government’s health care dispositions. In Sweden the National Board of Health, is now actively talking about the need for a working group to develop their plan. In Ireland the Deputy Chief Medical Officer at the Department of Health described the conference as "an important milestone" in the development of a national health strategy for rare disease patients and said the groundwork had been laid for discussion of all the main issues surrounding rare diseases, namely centres of expertise, research, access to therapies and treatments and patient empowerment. In France - the first country to have adopted a National Plan in 2005 - the conference was the opportunity to highlight a strong coalition of non-governmental stakeholders and the need to speed up the approval of the second RD plan, currently under preparation. “Although European policies always seem very far away for the average French citizen, French patient groups really understand the added value of working at European level,” argues Christel Nourissier, one of the six EURORDIS-EUROPLAN advisors.

Each country had to adapt to their particular situation. In Bulgaria, for example, there is already a National Plan but it focuses mainly on genetic testing, prevention, information and training. The conference was therefore the opportunity for rare disease patients to push their national authorities to include care and treatment in the existing strategy. A similar situation is taking place in Greece. “The Greek rare disease community was waiting for this conference, considering it an important opportunity to give a new start to a concrete implementation of the current Greek plan, compiled and published in 2008, but not yet applied. Some of the participants asked for binding European directives to oblige Greek National Authorities to act following common guidelines,” explains Simona Bellagambi, from UNIAMO and a EURORDIS-EUROPLAN advisor. In Romania, a resolution was signed to implement the existing plan. In Hungary, the conference was useful to stimulate the dialogue between concerned parties, and was timely to put pressure on national authorities, just a couple of months before the Hungarian Presidency of the EU started. The Polish conference was an important step towards a greater integration of patient organisations involved in the process and improved relations with the national health authorities. In Spain, the final report of the conference will be the roadmap to improve the extent and implementation of the existing National Plan. All stakeholders have agreed to continue the work started at the conference and meet up in a year’s time to discuss the same issues at regional level. “Let’s not forget that Spain has 17 regions with 17 different health policies. This is why it is so important for us to work also at the regional level to make sure the recommendations are actually implemented,” says Claudia Delgado of the Spanish RD alliance (FEDER). In Italy, the regional dimension is also very important. “Even though we have a universal health system and there is a specific law for rare diseases since 2001, the conference made it clear that there are great inequalities amongst regions in Italy,” says Simona Bellagambi. “There are good practices but they are isolated. We need a National Plan to streamline policy and create a common structure.”

Perhaps more importantly the conferences built up the momentum needed to hatch a new strategy or bring together all existing initiatives into one national plan. A framework for a National Plan in the UK, Ireland, Croatia and the much-awaited French second Plan were all announced on Rare Disease Day 2011, less than six months after the conferences were held.

What’s next?

“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,” says 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”, said Antoni Montserrat from the European Commission at the EUROPLAN Final conference in Rome. “We need to consolidate what has been created, which is strong.”

EURORDIS-EUROPLAN advisors are already thinking about follow up actions. “The networking efforts should be institutionalised” says Mirjam Mann. “We need to think of innovative ways to ensure the continuation of this multi-stakeholder dialogue,” adds Valentina Bottarelli. “We are also hoping that countries outside the initial 15 will join in and organise conferences based on the model developed by the EUROPLAN project.”

Each participating country has produced a conference final report, which has fed an overall report that will inform the wider community in formulating tools to assist all Member States in developing their plans or strategies for rare diseases. It will be also be added as an Annex to the EUROPLAN Recommendations.

For more information:
Read all EUROPLAN country reports
View EUROPLAN conference photos
Find out more about the EUROPLAN Project

This article was first published in the April 2011 issue of the EURORDIS newsletter

Author: Paloma Tejada
Photo credits: © EURORDIS