About: rare diseases
EU and UK patients with rare diseases in Brexit limbo
It is still unclear whether the UK will participate after Brexit in the European Reference Networks, which aim to help patients with rare diseases, potentially putting at risk millions of patients.
Patients: ‘Think carefully’ before questioning orphan drugs’ incentives
Organisations of patients with rare diseases have warned EU policymakers to “think carefully” before reviewing the incentives in the orphan drugs regulation, claiming that the pharma industry should not be discouraged from investing in new therapies.
IMI chief: ‘We need to learn how to share data in a safe and ethical manner’
Ethicists, humanists, lawyers and patients should come together to understand the risk of data in healthcare and whether patients are willing to take that risk, Pierre Meulien told EURACTIV.com.
Commission launches reference networks to face rare and complex diseases
In an effort to combat rare diseases and improve patient accessibility, the European Commission launched the European Reference Networks (ERNs) yesterday (28 February).
Commission must bring healthcare to the fore
Given that the current European Commission has not prioritised healthcare, it looks as though it is up to the European Parliament to push the agenda, writes Denis Horgan.
Health matters should supersede European bureaucracy
European red tape should not be an obstacle to effective healthcare. For patients with diseases like sarcoma, waiting means suffering and often avoidable death, writes Marlene Mizzi.
How Italy and France take on rare sarcoma cancers
EU member states are exploring ways to effectively tackle the rising occurrence and complex nature of rare cancers known as sarcomas.
Complex sarcoma cancer needs an overall strategy, report says
The diverse nature of rare cancers like sarcomas poses severe challenges to the medical community and policy-makers who need to seek a holistic approach, according to a report.
Andriukaitis: ‘Rare cancers present a particular challenge’
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.
Rare cancers: A headache for policymakers
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. InfographicPromoted content
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. VideoPromoted content
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.