Woman looking through microscopeADVOCACY

Accelerating Clinical Trials in the EU

The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) have launched an initiative to transform how clinical trials are initiated, designed, and run. This initiative, accelerating Clinical Trials in the EU (ACT EU), aims to further develop the European Union as a focal point for clinical research, promote…

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MEDICAL

New members in ERN BOND

On 1 January 2022, 620 new members will join the European Reference Networks, as unanimously approved by the ERN Board of Member States. As a result of the current call there will be nearly 1,500 ERN units in 27 Member States and Norway. The European Reference Network on Rare Bone Disorders (ERN BOND) suffered to…

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ADVOCACY

OIFE at Council of Federations meeting

November 9th and 10th OIFE was represented by Ingunn Westerheim at the Council of Federations (CEF) meeting of EURORDIS – the European umbrella organization for rare conditions. The socalled CEF is a forum where umbrella organizations and federations for rare conditions in Europe come together to learn about news in the European rare disease field…

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EVENTS

OIFE in panel debate on ERNs

The company EuropaBio has invited the OIFE President to represent the patient organizations at the upcoming Patient Bio-Forum on October 19, 2021 (11.00-12.30 CEST). In the upcoming edition of the forum, the focus will be on the challenges and opportunities of the 24 European Reference Networks (ERNs), which include “our own network” – ERN BOND…

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ADVOCACY

Tell Ursula about OI!

Tell Ursula von der Leyen, the President of the European Commission, YOUR reason why Europe needs to take action for a better future for people living with a rare disease by 2030. It’s important that people with OI are also represented in this important campaign document, asking for a new European action plan for rare…

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ADVOCACY

Save the European Health NGOs!

Large European health NGOs like EURORDIS – European Rare Diseases Organisation and European Patients’ Forum play a pivotal role in advocating for and communicating the needs of the most vulnerable in society, whilst continually pressing for greater action in health policy at the EU level. OIFE totally support their work to restore the operating grants…

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EDITORIALS

Enough is Enough! Speech from Rare2030

This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020.  “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…

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ADVOCACY

Rare 2030 Recommendations

On February 23rd we were at least six people from the OIFE-community represented at the big Rare 2030 conference brilliantly hosted by EURORDIS. The conference had more than 650 participants attending live (online) and even more people following on streaming. The main purpose was to present the recommendations from the Rare2030 foresight study. These were…

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Photo of arm getting a vaccineMEDICAL

Are COVID-19 Vaccines safe?

We bring you the following message from European Medicines Agency (EMA): “The EMA needs many detailed studies to confirm that a vaccine is safe, provides adequate protection and is of suitable quality. As a public-health body safeguarding medicines in the European Union (EU), EMA will only approve a vaccine for COVID-19 after a thorough evaluation…

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