Rare Disease Day, 29 February, marks a moment when an estimated 30 million people living with rare diseases across Europe gain a louder voice. Europe now has a generational opportunity to scale up programmes capable of improving millions of lives.
Marking the World Rare Disease Day, Health Commissioner Stella Kyriakides and health ministers called for stronger coordination around rare diseases with high hopes on European Reference Networks (ERNs).
Rare diseases are very serious conditions that affect around 30 million people in the European Union. Spinal Muscular Atrophy (SMA) is a rare genetic, neuromuscular disease affecting approximately 1 in 3,900–16,000 live births in Europe. In general, as rare diseases …
In shaping the future of rare diseases policies all stakeholders should cooperate to create an environment that actively supports research and clinical development of orphan medicinal products (OMPs). This entails building synergies all across the innovation ecosystem to address the …
Nine out of ten people living with rare diseases across Europe have been negatively impacted by the coronavirus pandemic, including three out of ten who said that this has caused “life-threatening” disruption, according to a recent study by EURORDIS-Rare Diseases Europe.
People living with SMA, ALS and other rare disease was the focus of the Rare Disease event at the EU Parliament on 18 February. The event was organised by Biogen in collaboration with EURORDIS, the patient organisation for rare diseases.
More than two years after its launch, the EU's fast-track approval process for marketing new drugs, called PRIME, is broadly welcomed by patients and industry, walking the fine line between patients' safety and expediency, and between the need to foster innovation and remaining abuse-proof.
The European Commission’s priority when tackling rare cancers such as sarcomas is to ensure European Reference Networks (ERNS) are put in place so that all patients have access to the best expertise available in the EU, Vytenis Andriukaitis told Euractiv.com in an interview.
The complexity of diagnosing and treating rare forms of cancers like sarcomas can be addressed by a multi-level approach and better coordination among member states, insist experts in the field.
A new report on medicines shortages experienced in European healthcare systems published on Monday (17 November) by the European Association of Hospital Pharmacists (EAHP) reveals that over 86% of hospital pharmacists are experiencing difficulties in sourcing medicines in the EU.
