EURORDIS showcased at EU event
The European Commission showcased the work that the EU is doing to secure the best available diagnosis, treatment and care for rare disease patients across Europe, through an event for European press and media entitled “European Actions to improve the life of patients living with rare diseases” .Organised by the Executive Agency for Health and Consumers, in close collaboration with EURORDIS and DG SanCo of the European Commission, the two-day meeting took place in Luxembourg at the end of October and brought together all the key actors and stakeholders in the field of rare diseases.
Ms. Testori-Coggi, Director General of DG SanCo introduced the event saying "Policy on rare disease is one of the areas where the EU Community added value is the highest" and went on to describe the results of the work undertaken with EU funding and to highlight the programmes foreseen for the coming years.
High officials of the European Commission and cutting-edge researchers from across the European Union discussed their plans and projects in areas as diverse as internationally driven research, development and monitoring of implementation of clinical guidelines, continuous update and validation of clinical information, support to patient groups and the setup of patient registries. A comprehensive report was also released detailing the programmes and activities being undertaken to treat rare disease patients in each of the Member States.
Undoubtedly the high-point of the day was when four patient advocates presented their stories of love - and loss - to highlight the elements of today’s EU-wide collaboration that made a difference to them and their families and those that would have made things better for them, had they been available. Lesley Greene, Yann Le Cam, Kay Parkinson and Avril Daly delivered powerful testimonies that gave a human face to the health challenges and illustrated the importance of coordination at EU level in the field of rare diseases, as well as the progress made in the last 20 years.The first day ended with a 10-minute video narrated by the Commissioner for Health John Dalli that showed the impact and the need for European initiatives in the lives of three patients and families. The video featured EURORDIS Board Member Béatrice de Montleau and her son Axel living with Duchenne, as well as two other patient representatives for Williams Syndrome and Multiple Endocrine Neoplasia.
The next day was devoted to presenting EU-funded actions and projects that bring together EU-wide expertise for the benefit of patients. Amongst the actions showcased were EURORDIS, the information portal ORPHANET, and the EU project to foster National Plans (EUROPLAN) and registries for rare diseases (EPIRARE).
In addition, the conference included presentations of 12 pilot European Reference Networks that are funded at European level, in an effort to share information and medical knowledge across borders. These networks are conceived to allow patients the best access to the latest expertise across the EU region, and the latest in research, no matter where they live.
The timing was right since European governments have recently signed up to create European Reference Networks of expertise for rare diseases as part of the EU Directive for Cross Border Health Care.
“At these times when the European project is under serious scrutiny or even threatened, there are few areas of undisputed added value of EU wide collaboration as the one of rare diseases“, said the Minister for Health of Luxembourg, Mr Mars Di Bartolomeo.
The event also served to focus attention on the 230 million euros spent by the European Union over the last four years and the additional 100 million euros that will be invested next year to fund research into treatments for rare diseases.
“Patients and experts provide the journalists with an insight into what is being done at European level in the domain of rare diseases and the impact of the EU action on the life of concerned patients and families,” comments Yann Le Cam, CEO of EURORDIS. “The event served to show the usefulness of the EU Public Health Programme (and its budget of 300 M€ in total for the period 2007-2013). We hope it helps to push Rare Diseases up even further as a policy and budget priority based on the demonstration of its high community added value and real impact on people’s lives.”
For more information:
- To view the project presentations and patient testimonies: visit the event webpage
- Read Yann Le Cam’s testimonial as CEO of EURORDIS and parent of Coline, a young adult living with Cystic Fibrosis
- Watch the European initiatives for rare diseases video
- More information on EU policies on Rare Diseases
This article was first published in the January 2012 issue of the EURORDIS newsletter
Author: Paloma Tejada
Photo credits: © EC/Europa & Inserm /Patrice Latron
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