About: rare diseases Archives
-
INFOGRAPHIC: Rare diseases in the EU
Rare diseases affect more than 30 million Europeans, many of whom are children! What is the European Union doing about it?
-
Ivermectin: A Nobel Prize medicine inaccessible to the world’s poorest
The true potential of new medical breakthroughs can only be unlocked if they are offered at an affordable cost to those who need them most, writes Jose Muñoz.
-
Patient organisation: Unacceptable differences in member states for people with rare diseases
There are huge differences when it comes to access to therapies for patients with rare diseases. The Commission could do more to make member states aware that this is unacceptable, says Terkel Andersen.
-
Health Commissioner calls for national plans to tackle rare diseases
Patients with rare diseases are more vulnerable, as they live with more ambiguity about their affliction than others, according to Health Commissioner Vytenis Andriukaitis. But with the help of patient groups and national action plans in member states, their lives can be improved.
-
A breakthrough in combating rare genetic disorders
Europe can lead the way in developing gene therapies to tackle the growing and persistent problem of previously incurable diseases, with huge potential benefits for both patients and industry. Europe needs to promote cross-border research and facilitate access to these new therapies, argues Aurelio Maggio.
-
€144 million earmarked for new research on rare diseases
The European Commission will provide €144 million of new funding for 26 research projects, with the objective to deliver 200 new therapies for rare diseases by 2020, the EU's executive announced today (28 February).
-
Study finds orphan drugs economically viable
Orphan drugs, pharmaceutical agents that are developed specifically to treat rare diseases, have the potential to generate as much lifetime revenue as drugs used for more common health conditions, according to a new study.
-
Translating Research to Health Innovation: How can forthcoming legislation pave the way for better care in rare diseases?
Several European Commission 2012 initiatives will impact healthcare innovation. The Horizon 2020 research programme will seek to link the health industry, public sector and academia in new research clusters. A revision to the Directive on Clinical Trials will seek to promote health research and innovation. Meanwhile, the Transparency Directive will ensure that research efforts translate into faster access to much- needed medicines.
-
Sufferers want EU ethics code for drug testing
The European Union needs to play a stronger role in coordinating research into new drugs and should help produce a code of ethics for trials, health officials said last week.
