Health First Europe attended the 4th Annual Symposium on Rare Diseases organised by EURORDIS under the heading of “Rare but Equal” to create awareness and bring attention to rare diseases and the millions of people across the globe debilitated by them. The event was attended by a wide variety of stakeholders and interest groups from more than 40 countries worldwide, which included representatives of the European Patients’ Forum, EPPOSI, Bayer Healthcare, various officials of DG Sanco, as well as Antonyia Parvanova, MEP and shadow rapporteur on the recently adopted EU Directive on Cross-Border Healthcare and Patient Mobility.
The symposium highlighted how rare diseases affect patients and the healthcare community since these diseases are typically life threatening or of severely handicapping quality – often due to the low prevalence of each disease as medical experts are rare and knowledge is scarce. Very few cures exist due in part to a lack of investment in research as profitability remains low in this medical field. Without research, many rare diseases continue to be misunderstood causing a shortage of effective treatment options for these diseases. In order to examine Europeans’ awareness and knowledge of rare diseases and their support for policy initiatives and actions taken at national and EU level, a survey was conducted in all 27 Member States showing that 17% of those surveyed knew someone suffering from a rare disease, but a larger proportion (40%) have never heard of anyone affected.
During the symposium, many panelists discussed the issue of health inequalities of rare disease patients and presented ways to tackle these issues, in addition to informing stakeholders of new developments in e-Health for rare disease patients. Numerous participants cited various aspects of the Cross-border Healthcare Directive as a mechanism for easing the burden on rare disease patients. The directive, adopted on the same day by the Council of the European Union, will allow patients with rare diseases to seek healthcare in another Member State helping to alleviate difficulties for patients who cannot find treatment within their own Member State.
The European Commission made it clear that reducing inequalities in health, specifically for rare disease patients, is key to health strategy. Stefan Schreck, DG SANCO, Head of Unit for Health Information, announced that the Commission created a committee of experts on rare diseases in December last year. It includes 50 members encompassing patient organizations, other stakeholders and the Commission, with the aim of determining further development of policy on rare diseases. Its goal is to facilitate better healthcare on the basis of principles of equity and solidarity.
Nathalie Chaze, Head of Unit for Health Strategies and Health Systems, further discussed cooperation between Member States in light of the new directive. Focus will be made on increasing quality and safety of healthcare, recognition of prescriptions across Member States (eHealth) and further collaboration between Member States to make the right decisions on health investments and spending.