About: Orphan drugs

Health 12-11-2020

Economist: ‘Premature’ to decide changes in Orphan Drugs law

Europe needs to give EU Orphan Drugs regulation more time to show its effectiveness before reviewing the incentives it provides and putting pharma innovation to the test, economist Adam Hutchings told EURACTIV in an interview.
Health 03-11-2020

Report: Without orphan drugs law, 2mn patients deprived access to therapies

In the absence of the EU orphan drugs regulation, which focuses on rare diseases, approximately two million patients would not get access to therapies, a new industry-funded report has found.
Health 23-07-2020

Early stakeholder dialogues crucial for success of rare orphan medicines

Early dialogue between stakeholders is crucial for the effective development and success of rare orphan drugs, used to treat patients with rare diseases, Anna Bucsics, project adviser at the mechanism of coordinated access to orphan medicinal products (MoCA), told EURACTIV in an interview.
Health 13-07-2020

Data sharing critical to close ‘innovation blackhole’ for rare diseases

Access to data and 'real world evidence' obtained from observational data is needed to help push research and innovation on rare diseases, with support needed to encourage and harmonise this across Europe, stakeholders have said. 
Health 09-07-2020

MEP: A common EU tool to incentivise production and availability of orphan drugs

When it comes to rare diseases and 'orphan drugs', technology is there to support an “objective” EU tool that could provide the pharma industry with the necessary incentives to research and produce orphan drugs and simultaneously avoid exhausting ailing health systems, MEP Stelios Kympouropoulos told EURACTIV in an interview.
Health 08-07-2020

EU orphan drugs law and the emergence of SMEs

The legal framework provided by the current EU orphan drugs regulation has encouraged a number of small and medium sized companies (SMEs) to develop innovative technologies in the fight against rare diseases in Europe, stakeholders told EURACTIV.com.
Health 06-07-2020

Commission’s ‘risky’ move to re-visit orphan drugs regulation

The European Commission is expected to present by the end of July an evaluation study on the pros and cons of the application of orphan and paediatric regulations, which deal with a niche segment of rare diseases that affect fewer than five in 10,000 people.
Health 10-10-2018

New drugs: how much are governments paying for innovation?

The European healthcare sector is divided over the “actual value” EU governments pay for the authorised and partly public-funded novel drugs, compared to medicines already on the market.
Health 12-10-2017

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.
Health 10-02-2017

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.
Health 02-02-2017

Lawmakers warn EU pharma industry about drug pricing

Pressure is mounting on pharmaceutical companies to reconsider the way they do business by refocusing their efforts on meeting patient needs and health outcomes rather than their own profits.
Health 18-10-2016

Italy’s pharma scandal heats up drugs pricing debate

The European Consumer Organisation (BEUC) has urged the European Commission to investigate pharma-industry “unethical” practices on drug pricing, after a scandal revealed last week in Italy.
Health 20-06-2016

EU health ministers confront crisis in affordability of medicines

EU health ministers took reluctant steps last Friday (17 June) to address the rising price of medicines.

€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.
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