Photo of Ursula von der Leyen, European Commission PresidentADVOCACY

Call for European strategy on rare diseases

On Rare Disease Day, 48 Members of the European Parliament (MEPs) wrote to the President of the European Commission, Ursula von der Leyen, calling on her to deliver a comprehensive European strategy on rare diseases.  The goal is to improve the lives of the 30 million European citizens living with a rare disease. The letter…

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Ukranian flag with the text Peace for UkraineSTORIES

War in Ukraine – how can you help?

There is a brutal war going on in one of OIFE’s member countries, and the last couple of days OIFE has received several questions from people who are concerned about the situation in Ukraine. Many are wondering if there is an OI-organization in Ukraine and how they can be of assistance to people with OI…

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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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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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ADVOCACY

Council of Federations meeting

One or two times a year, members of OIFE’s Executive Committee attend the Council of European Rare Disease Federations (CEF) in EURORDIS. On November 26th and 27th Ingunn and Bruno attended the Zoom-meeting, where more than 90 people from all over Europe took part. Topics included Rare Disease Week 2021, ERNs, Access to therapies, EU…

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ADVOCACY

LAUNCH OF EURR-BONE

Today was the official launch & kickoff of the the European Registry for Rare Bone and Mineral Conditions (EuRR-Bone), which is funded by the European Union’s Health Programme. OIFE was represented by Rebecca Tvedt Skarberg (ERN BOND ePAG). EuRR-Bone’s aim is to create a high-quality, patient-centered registry for rare bone and mineral conditions including OI…

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ADVOCACY

EMA & EURORDIS Summer School

The European Medicines Agency (EMA) was founded in 1995, and since then has worked across the EU and globally to protect public and animal health by assessing medicines and by providing independent, science based information on medicines. In 2000, patient representatives joined for the first time as members of one of EMA’s scientific committees. Today,…

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